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Short Biographies and Contact Information from Speakers

Cluj-Napoca, Romania
June 21-22, 2007

In Alphabetical Order

Achutegui, Irune

Irune Achutegui is a Psychologist and a member of the Balint Association. Since 1995, she has been a Psychologist in the Psychological Unit of the Pediatric Endocrine Department, H.San Raffaele Milan, and dealing with Prader-Willi patients, their parents and teachers. She is specifically involved in psychological and educational treatment for Prader-Willi children and in a yearly group program for children and parents. Since 1998 she has been a Psychologist in the Center "Paolo Pini" for disabled children in Milan, as supervisor for volunteers (aiming at improving the quality of life for PW children in the leisure time).

She has participated in PWS International workshops and conferences: in Jesolo- Italy 1998, St. Paul Minnesota USA 2001, and in South America (Santiago 2002, Mexicali 2003) and Spanish National Conferences (2002; 2005) presenting studies about Psychological aspects of PWS and family management. She participated in 1995 in Italian National Conferences on PWS. She was a teacher in a course for Italian Psychologists focusing on young PWS and their families 2001 (40h) and in courses in Spanish for Psychologists to increase their ability to deal with PWS, in 2003 and 2005, sponsored by IPWSO and the Hospital San Raffaele Milan (each course was 45 hrs.). Principle Research:

• P. Bregani, I. Achutegui, et al. "Self - Injurious Behavior in Prader Willi" ,2001.
• P. Bregani, I. Achutegui, et al. "Relationship between cognitive development and dietary compliance in Prader Willi patients", 2002.
• I. Achutegui, P. Bregani, et al. "Trend towards autism in children with Prader Willi Syndrome", 2006.

Irune Achutegui
Via Delle Regioni 28, Segrate
20090 Milan. Italy
irunefastwebnet.it

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Arnesen, Ragnhild Overland

Ragnhild lives in Bergen, Norway. She is a member of the board of The Norwegian PWS Association, delegate to IPWSO, and responsible for the Norwegian PWS-newsletter. She has daughter with PWS, who is 28 years old. This is her third international PWS Conference. Ragnhild participated New Zealand three years ago, and again in Oslo in 1995. Besides this, she an information adviser in the Municipality of Bergen, working in the Department for health and welfare.

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Aymé, Ségolène

Ségolène is a medical geneticist, the director of Research INSERM, and the director of Orphanet since 1997. She researches the impact of new technologies in human genetics on the public and their ethical implications. Since 1996, Ségolène has been an expert to the European Commission and, since 1998, she has been the president of the "Public and Professional Policy Committee" of the European Society of Human Genetics.

She is also a board member of the European Platform of Patients Organizations, Science and Industry (EPPOSI0, a committee member for Marketing Authorization of Drugs at AFSSAPS, and a member of the COMP-WGIP at the EMEA.

Also, in the recent past, Ségolène was a member of the INSERM ethics committee, of the scientific advisory board of the French Agency for the Evaluation and Accreditation in Health (ANAES), the French Clinical Research Committee at the Ministry of Health and the president of the International Federation of Human Genetics Societies. Ségolène is also married and has two children.

Ségolène Aymé
102 rue Didot
75014 Paris, France
Tel: 33 1 56 53 81 37 - Fax : 33 1 56 53 81 38

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Baechli, Doris

Doris Baechli is the Mother of Pascal (14), Carla (9) and Samuel (5) and lives in Trübbach, Switzerland. Shortly after Pascal was diagnosed, the Baechli family moved to the US and had the chance to interact with many families and PWS experts through PWSA and its California chapter.

Based on their experience and how much a family benefits from such a support, Doris got involved in the Swiss PWS association and became an international representative. Together with her husband she now leads the association. They believe in a comprehensive management approach to support our children as promoted e.g. by Urs Eiholzer ... and know that active parent networking is an essential part of it.

www.prader-willi.ch

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Baschirotto, Anna and Giuseppe

Anna and Giuseppe Baschirotto founded the Association for Rare Disease in 1988 in memory of their son, Mauro Baschirotto, who died from a rare auto-immunitary syndrome at the age of 16 years. It was founded in order to carry out studies and research about those diseases, which usually present diagnostic and therapeutic difficulties, sometimes without solutions. Moreover, it is very difficult to find suitable pharmacological treatments for these diseases, because research costs are often too expensive and not very profitable for the pharmaceutical industry.

The Association is fully committed to fighting these diseases (over 5,000 are known) with strategic initiatives aimed at: Epidemiologic studies, a consultation and information service for patients and their families, and for medical and paramedical staff they offer international competitive examinations, scientific workshops and meetings, task forces for each specific disease biological bank, and data base.

Associazione Malattie Rare "Mauro Baschirotto"
Costozza Vicenza - Italy - Tel. Fax. +390444555557
www.birdfoundation.org

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Blichfeldt, Susanne

Susanne Blichfeldt is a Pediatric consultant, specializing in neuropediatrics, including diagnostic investigations and treatments of children with various syndromes including Prader-Willi Syndrome (PWS).

She has done PWS research on growth hormone and on sex steroids in adults. She has distributed questionnaires on PWS in Denmark and in Scandinavia. She Co- founded the Danish PWS Association in 1986, and now is a medical advisor and leader of the advisory board. She is a medical advisor for the International PWS Organization (IPWSO), and a former board member. Since 1986, she has had presentations and educational sessions on PWS nationally and internationally for both parents and professionals involved in PWS. She has co-chaired programs for Parents and Professionals at the International Congresses on PWS in 1991, 1995, 2001 and now in 2007.

Susanne Blichfeldt M.D.
Kildehusvej 12
4000 Roskilde, Denmark
Tel: (+45)46373204
s.blichfeldtdadlnet.dk

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Booth, John

John Booth is the chairman of the Prader-Willi Syndrome Association (UK, formed in 1981). He is 72 yrs old, married with 3 children of whom the second, Rachel, is a 43 year old woman with PWS.

John 's working career was spent in the Oil Industry around the world. Rosemary, his wife, will be with him at the conference. John has been a Trustee of the Association since 1992 (he thinks), Chairman from 1996 to 2001, and then again from last year.

Prader-Willi Syndrome Association UK
125A London Road
Derby DE1 2QQ
England/UK
Tel: 0044 (0) 1332 365676
adminpwsa.co.uk
www.pwsa.co.uk

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Boger, Urith

Urith was born in 1946 in Tel Aviv, Israel. For many years, she was a stage actress and playwright and in recent years Urith has been practicing painting. At the age of 19 she married an Air force pilot, so they have been a service family until 11 years ago when her husband retired. Doron, who is her child with PWS is 3rd out of 4 children, and was born when Urith was 35 years old. Doron and is now 26. She has 6 grandchildren, and the oldest grandson has PDD, which caused her a lot of pain in the beginning. But he is doing very well so they have came to terms with that.

In 1992, Urith established a PWS association with a gathering of 8 families. Since than they grew to be a group of 80 families-out of which 25 are registered members and with all the others they have more or less tight connections.

Unfortunately, and very much like in other countries it seems that the activity of their group lies mainly on her shoulders. Urth gave lots of thought to that problem in the past and came to the conclusion that a group of 25 couples is too small to grow more than 7 active persons that are in the board forever. In the panel Urth will give a short presentation of the process of growing awareness to PWS in her country.

Urit Boger
31Aya st.
Ramat Hasharon 47226 - Israel
Tel: 972-3-5409882
Fax: 972-3-5405271
Koshi1017.net.il
www.pwsil.org.il

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Bregani, Palma

Palma is a psychologist and psychotherapist, a member of the Balint Association. Since 1977, she has been head of the Psychological Unit of Pediatric Endocrine Department, H.San Raffaele Milan, dealing with, in particular, Prader-Willi patients. This involves follow-up evaluations, individual interventions, as well as a specific yearly program including pedagogic groups with children and adolescents and Balint groups with parents.

She has had participation in PWS International workshops and conferences presenting studies on PW's emotional vulnerability and family management in Noordwiijkerhout -The Netherlands 1991, Sormarka-Oslo 1995, Jesolo- Italy 1998, St. Paul Minnesota USA 2001, in South America (Asunciòn 2000, Santiago 2002, Mexicali 2003), in a Spanish National Conference in 2005 and in all yearly Italian National Conferences on PWS.

She was a teacher in a course for Italian Psychologists focusing on young PWS and their families 2001 (40hrs.) and on courses in Spanish for Psychologists to increase their ability to deal with PWS, in 2003 and 2005, sponsored by IPWSO and Hospital San Raffaele Milan(each course was 45 hrs.).

Palma Bregani
Via Solferino 22
20121 Milan. Italy
bregani.palmahsr.it

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Cassidy, Suzanne B.

Dr. Cassidy is currently a Clinical Professor of Pediatrics at the University of California, San Francisco. She is a board certified Clinical Geneticist and Pediatrician whose career includes doing patient care, teaching for medical students, residents and advanced trainees, and clinical research mainly focused on Prader-Willi syndrome.

She has also been the director of clinical genetics divisions at two institutions in the past. She has conducted multi-disciplinary specialty clinics for PWS since 1981 and has published widely on her clinical observations and research on PWS.

She has been the Chair of the Scientific Advisory Board of Prader-Willi Syndrome Association (USA) and has been the professional delegate to IPWSO from the USA since IPWSO was established. She has helped to organize several IPWSO and PWSA(USA) Scientific Conferences, and is a frequent speaker about PWS at local, regional, national and international educational and medical conferences related to PWS.

Suzanne B. Cassidy, M.D.
Clinical Professor of Pediatrics
Division of Medical Genetics
University of California, San Francisco
66 Toyon Lane
Sausalito, CA 94965 USA
cv.scsbcglobal.net

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Curfs, Professor Leopold M.G.

Professor Leopold M.G. Curfs, PhD, heads the Governor Kremers Centre at the University Maastricht and Academic Hospital Maastricht. Research in his group is aimed at understanding mechanisms by which specific genes affect morphological structure and information processing at different levels of biological organization and thereby contribute to the cognitive abilities of the person.

He was rewarded with the 'Gouverneur Kremers' professorship at the University Maastricht, a research chair in learning disabilities.

He has been published on different aspects of PWS, most specifically behavioral and psychiatric disorders, and comparisons between genetic subtypes. Leopold Curfs has been a member and the chairman of various university and professional committees and boards. He is a board member of PWS the Netherlands and chairman of their scientific committee. He is the scientific representative for the Netherlands to the International PWS Organization.

Prof. Leopold M.G. Curfs
Director Governor Kremers Centre
University Maastricht / Academic Hospital Maastricht
Department of Clinical Genetics
University Hospital Maastricht
P.O. Box 5800
6202 AZ
Maastricht, The Netherlands
curfsmsm.nl

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Dan, Dorica

Dorica Dan has been involved in the founding of the Romanian Prader Willi Association in 2003, serving as its president from the beginning. They would never do this without the permanent encouragement of the PWS international family.

Since 2005, she has been also responsible for coordinating the activities of the first Centre for Information about Rare Genetic Diseases in Romania, a centre that is considered of great importance to their organization. Currently, they are working to establish the National Alliance for Rare Diseases.

Dorica is both a patient and a mother of a child with PWS. She had poliomyelitis as child and was always surrounded by people with disabilities. Her daughter Oana, 22, has Prader-Willi Syndrome and for many years Dorica believed that she was diagnosed incorrectly, but didn't know where to look for help. Oana is well integrated into the community and her parents are very proud that she finished an ordinary high school and now she is helping in the centre as a secretary. Dorica has been involved in working with disabled people since 1993 as a board member of the Association for Disability People in Salaj, Zalau (Romania).

Recently, Dorica was elected as a board member of EURORDIS. She really hopes to be able to continue working for the benefit of people affected by PWS and other rare diseases, to acknowledge and help in the evolution of the realities of the Eastern European countries in this field.

Dorica Dan- President Romanian Prader-Willi Association
Str. Avram Iancu, nr. 29
Zalau, Romania
Jud. Salaj 450143
doricadyahoo.com
www.apwromania.ro

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Davies, Peter SW

Associate Professor Peter SW Davies has a long track record of research in the area of nutrition, growth and body composition in both health and disease. PSW Davies is a recognized international expert in children's growth and development. He has served on a number of expert panels and committees relating to growth and development, energy and body composition.

He was awarded the Nutrition Society medal for the UK in 1991, and was nominated for the Australian Commonwealth Health Minister's Award for Excellence in Health and Medical Research 2002. He has over 50 peer reviewed publications in nutritional science since 2000. He has written a number of book chapters and co-edited books in the field of nutritional science.

PSW Davies is a founding editor of the International Journal of Body Composition Research and also an editor of the International Journal of Obesity and Acta Paediatrica. A Professor Davies has published a number of papers relating to Prader-Willi syndrome over the years, notably in relation to growth hormone treatment and body composition assessment.

He is Chair of the Australasian Prader-Willi Syndrome Advisory Committee and also Scientific Adviser to the PWS Association in New Zealand. He is the Director of the Children's Nutrition Research Centre (CNRC), at the University of Queensland, Royal Children's Hospital in Brisbane Australia. PSW Davies also oversees the Ozgrow research project which is a national data depository relating to growth of all children in Australia who are receiving growth hormone therapy. He is also Director of Research in the School of Medicine at the University of Queensland and Chair of Nutrition Australia.

Associate Professor Peter SW Davies
Director Children's Nutrition Research Centre
Discipline of Pediatrics and Child Health
University of Queensland
Royal Children's Hospital
Herston Brisbane QLD, Australia
www.som.uq.edu.au/cnrc.htm

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Eiholzer, Urs

MD PhD. Urs Eiholzer studied medicine at the University of Basle (1971-1978) and became specialized in pediatrics while he was at the University hospitals of Lausanne and Zurich as well at the Cantonal Hospital of Lucerne (1978-1983). Between 1983 and 1985 he received training in pediatric endocrinology at the University of Zurich.

He was a fellow of Prof. Andrea Prader and Prof. Milo Zachmann and part-time head of the division of pediatric endocrinology at the University of Lausanne (1985-1992). Since 1992 he has been the head of the "Center for Pediatric Endocrinology Zurich" (former 'Institute Growth Puberty Adolescence') and holds private practices in Zurich and Lausanne.

His clinical research deals with growth and puberty related questions, with the regulation of appetite, activity and body composition and with the Prader-Willi syndrome. He is author of numerous scientific publications and several books, some which contain valuable information for patients and their families.

PD Dr. med. Urs Eiholzer
Center for Pediatric Endocrinology Zurich (PEZZ)
Moehrlistrasse 69
CH-8006 Zurich
Switzerland
Tel: +41 44 364 37 00
Fax: +41 44 364 37 01

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Fornasier, Giorgio

Giorgio Fornasier was born in Belluno (Italy) on 29 September 1947. He has been married since 1972 and has two children. He has a son with Prader-Willi Syndrome, Daniele, born in 1976, and is member of the Italian PWS Association. They asked him to be their representative abroad and Parent Delegate at IPWSO conferences.

In Oslo in 1995 he was elected as member of IPWSO Board with the charge of international promotion and later as IPWSO Treasurer. During the 3rd International PWS Conference in Italy in 1998 he was elected as IPWSO President. Giorgio served as IPWSO President for two mandates until 2004, and today he works for the same international Organization represented in 76 countries, as Director of Program Development.

Giorgio Fornasier
IPWSO D.O.P.D.
via Villa, 45
32020 Limana, Italy
Tel +39 0437 97973
Cel +39 335 369252
g.fornasalice.it

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Forster, Janice L.

Current Position: Child, adolescent and adult psychiatrist in solo private practice specializing in developmental neuropsychiatry; founding partner of the Pittsburgh Partnership, specialists in Prader-Willi syndrome.

Professional activities: career educator; senior examiner in general psychiatry and child and adolescent psychiatry for the American Board of Psychiatry and Neurology (ABPN); chair of the audio-visual subcommittee of the American Board of Psychiatry and Neurology; member of the Clinical Advisory Board of the Prader-Willi Syndrome Association of the United States; and consultant for the International Prader-Willi Syndrome Organization.

Clinical and research interests: translational neuroscience; phenomenology of neuropsychiatric conditions; diagnosis and treatment of the psychiatric co-morbidity associated with autistic spectrum, Asperser's and Tourette's disorder; verbal and nonverbal learning disabilities; brain injury (dysphasia and dyspraxia); mental retardation, cerebral palsy and epilepsy; and management of genetic syndromes (Prader-Willi, William, Fragile X and Down).

Janice L. Forster, MD
Developmental Neuropsychiatrist
Pittsburgh Partnership, specialists in Prader-Willi Syndrome
615 Washington Road, Suite 107
Pittsburgh, PA 15228-1909 USA
Tel: 412-247-5822 - Fax: 412-344-7717
janiceforstermdaol.com

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Fuhrmann, Monika

Monika Fuhrmann is from Germany and has a ten year old son with PWS. Her son was diagnosed at the age of 2 months. After contact with the German PWS association, she attended the International PWS Conference in Italy 1998 as parent delegate and became a member of the IPWSO Board from 2004.

Presently, she is an active member and on the Board of the German PWS association. Her son Johannes attends a regular school. Two teachers, one from the regular school and the other from a special education school, teach all students in cooperation, sharing the teaching load.

Monika Fuhrmann
Weiherstr.23
D-68259 Mannheim
Tel: +49 6217992193
monikafuhrmannprader-willi.de

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Gardner, Jim

Jim Gardner is a parent of a 38 year old son who has PWS. He has participated in the founding of group homes for his son in 1992, 1997, and 2001. He has served on the PWSA USA board of directors, including several years as treasurer. He has also served on the PWS of Minnesota board for 16 years including the positions of president, treasurer, and currently vice president. He co-chaired the 2001 International and PWSA USA conference in Minnesota. He has presented at several national and international conferences. He is a graduate of Yale University and retired from banking and commercial real estate management.

Jim Gardner
4710 Bouleau Road
White Bear Lake, MN 55110 USA
Tel: 651-429-6441 - Fax: 651-429-6601
JPGMNearthlink.net

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Genstil, Larry

Larry is a psychologist. He received a Ph.D. in Educational Psychology and Special Education from the University of Southern California in 1981, and an M.S. in Rehabilitation Counseling also from USC in 1976. He also has a BA in Psychology from Grinnell College, Grinnell, Iowa, from 1971.

Larry was born and raised in Los Angeles. During his junior year of college, Larry attended Hebrew University, in Jerusalem, Israel. There he met his future wife, Sara. They married at the end of that academic year. Upon graduation from Grinnell, in 1971, they returned to Israel. Larry and his wife lived there for two years, during which their two sons were born, in 1972 and 1973. They then returned to the US, also to Los Angeles, in 1973, when Larry began attending USC. He worked in various para-professional positions both to gain experience and to support his family during his schooling. Beginning in 1976, Larry worked with people with developmental disabilities. In 1979, he worked with two people with PWS, and from then on, I almost always had a PWS person or two on his caseload.

In 1984 Larry became a Licensed Psychologist in the State of California. He opened a private office for the treatment of people with developmental disabilities in 1978, and became a vendor for the Regional Centers for the Developmentally Disabled in California. He also consulted in various group homes and actually ran two of them during these years. As his office grew, Larry hired additional people. By 1986, when Larry left, there were 22 people working in his office.

He moved back to Israel with his family in 1986. There, he worked in two large institutions for the retarded, and also worked as a psychologist for the Rehabilitation Center of the Union of Kibbutz Movements. Through this center, Larry worked in over 100 kibbutzim in Israel, primarily with people with developmental disabilities.

He had a daughter born in 1988 in Israel. His sons are now both married, one living in Israel and the other living in the US. His daughter is just now finishing high school.

On June 1, 1991, Larry opened his own group home in Israel, through his own organization, the Genstil Institute of Human Behavior, called the Genstil Institute Hostel. On May 1, 1993, Larry accepted the first resident with PWS. As word got out that he was familiar with the syndrome and would accept people with the syndrome, additional referrals began filtering in. The hostel was recognized by the Department of Rehabilitation of the Ministry of Social Affairs in 1993. The Department of Rehabilitation suggested separating the two groups of residents, making the PWS residents a separate program on Dec. 1, 1998. Since then, this program has grown such that currently there are 17 residents with PWS, housed in two houses, males in one and females in the other.

In 1996, Larry was asked by Prof. Varda Gross, a Pediatric Neurologist at Sha'are Zedek Hospital in Jerusalem to be the psychologist for a Prader-Willi Syndrome Multi-Disciplinary Clinic that she wanted to open. He agreed, and they began seeing people with PWS. Since this is the only PWS clinic in Israel, they see almost all people in the country who have been diagnosed with PWS. The clinic consists of Prof. Gross; Dr. Fortu Ben-Harouch, a Pediatric Psychiatrist; Dr. Harry Hirsch, a Pediatric Endocrinologist; Yael Landau, a developmental psychologist; and Ronit Dadoush, a Dietitian. When needed, medical specialists in additional areas of expertise are called in. The clinic continues to see patients about once every two months.

Larry currently directs the hostel and also serves as its psychologist. He also has a small private practice. He works at Sha'are Zedek Hospital in Jerusalem eight hours a week as a psychologist in the Children's Units. And he teach Special Education in a teacher's college in Jerusalem.

Larry Genstil
12 Haruvit St.
Mevasseret Zion, Israel 90805
Home: 972-2-5343388 - Cell: 972-50-4600480
lgenstilbezeqint.net

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Giltvedt, Kaja

Kaja Giltvedt has her physiotherapy education from Oslo Norway 1981 and a Bachelor of Physical Therapy Degree from the University of Manitoba Canada 1984. She has a Masters in Health Sciences from the University of Oslo 2001 and is a certified Pediatric Physiotherapist. Since 1990 she has worked with children from 0-18 years both in community care, at the Ullevål university hospital in Oslo and at Frambu centre for rare disorders where she has met many of the children with PWS in Norway.

Kaja Giltvedt
Pediatric physiotherapist
FRAMBU Centre for Rare Disorders
Sandbakkveien 18
1404 Siggerud, NORWAY
Tel: +47 64 85 60 00
kgiframbu.no

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Goff, Barbara J.

Barbara J. ("BJ") Goff, Ed.D is an Associate Professor of Education at Westfield State College in Massachusetts, USA. She has 35 years of experience working with individuals with developmental disabilities in residential, educational, vocational, and home settings.

She is as a consultant and trainer for schools and providers serving individuals with Prader-Willi syndrome throughout the US. Her work includes the development of residential, vocational, and crisis intervention programs; advocacy; providing expert testimony; program evaluations; training and consultation with educators and other professionals.

She co-authored a handbook on PWS for Educators, entitled The Student with Prader-Willi Syndrome: Information for Educators with Barbara Dorn, RN, BSN. She authored two chapters on educational issues and co-authored one chapter on sexuality in the third edition of Management of Prader-Willi Syndrome (2006). She is currently writing a training manual for residential providers.

Dr. Goff serves as an educational crisis consultant for PWSA/USA; assisting families and schools to successfully collaborate on behalf of students with PWS. She is a frequent presenter at national, state, and local conferences. She also served as a conference planner for the Provider/Careers Day for the 2004 International PWS Conference in New Zealand. BJ is excited and honored to be part of the international conference in Romania and hopes to connect with colleagues from around the world.

Barbara J. Goff
Ed.D, Associate Professor, Westfield State College, MA
33 Benz St.
Springfield, MA, USA 01118
Tel: 413-783-8192 or 413-572-5319
bgoffwsc.ma.edu

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Goldstone, Anthony P.

Dr. Tony Goldstone attended medical school at both Cambridge and Oxford University in the United Kingdom, and trained in general medicine, adult endocrinology and diabetes at the Hammersmith, St. Bartholomew's and Royal London Hospitals in London. He obtained his Ph.D. from Imperial College London, researching the hypothalamic control of feeding and metabolism.

He is currently a Senior Clinician Scientist and Consultant Endocrinologist at the MRC Clinical Sciences Centre, Hammersmith Hospital, and Imperial College in London.

He has researched and published widely on neuroendocrine and metabolic abnormalities in Prader-Willi syndrome, particularly investigating the causes of hyperphagia and obesity, through clinical, post-mortem, animal model, interventional, fat and brain imaging studies.

Dr. Tony Goldstone MA MRCP PhD
Senior Clinician Scientist in Metabolic Imaging, Hon Consultant Endocrinologist
Robert Steiner MRI Unit, Imaging Sciences Department
MRC Clinical Sciences Centre, Faculty of Medicine
Imperial College, Hammersmith Hospital Campus
Du Cane Road, London W12 0NN
United Kingdom
Tel.: + 44 (0)20 8383 1510
Cell: + 44 (0)7958 612893
tony.goldstoneimperial.ac.uk

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Gourash, Linda M.

PWSA-USA Board of Directors; Pittsburgh Partnership, Specialists in Prader-Willi Syndrome. Dr. Gourash is a Developmental Pediatrician. She has worked with behavioral disorders and medical problems in the developmentally handicapped for nearly 30 years beginning as full time faculty in the departments of Pediatrics and Psychiatry of the University of Pittsburgh School of Medicine.

She began her focus on Prader-Willi Syndrome upon becoming the program medical director of the Prader-Willi Syndrome and Behavioral Disorders Unit of The Children's Institute in 1999. Dr. Gourash led a team of clinicians managing hundreds of children and adults with PWS in medical crisis from extreme obesity, diabetes, obesity hypoventilation, right heart failure and respiratory failure and those who presented with severe behavioral dyscontrol, psychosis and other mental disorders.

Dr. Gourash is co-founder of the Pittsburgh Partnership (2004). Together with Dr. Janice Forster she teaches and writes about the practical management of persons with PWS and provides consultation for physicians managing complex cases of PWS. Their "Psychiatrists' Primer for PWS" is widely used by clinicians in the USA and is available as a PDF file from the PWSA-USA website. Their DVD, "Food, Behavior and Beyond" is widely used for training caretakers and is very popular with parents. Dr. Gourash serves on the Board of Directors of the PWSA-USA.

Linda M. Gourash, MD
6919 Rosewood Street
Pittsburgh PA, 15208
412 831-0355 ext 534
wfgourashaol.com

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Hasegawa, Tomoko

Dr. Hasegawa is a Clinical Geneticist and Pediatrician. She was born and brought up in Japan. She graduated from Keio University School of Medicine in Tokyo. She studied clinical genetics and cytogenetics studies at the Human Genetic Institute, the University of Muenster in Germany as an assistant doctor from 1973-1975. Since 1985, she has been the Chief of the Clinical Genetics and Cytogenetics, Division of Shizuoka Children's Hospital in Japan, and from 1996-2005 PWS Clinic. In 2005 she resigned and set up a Genetic Support and Consultation Office. Her first encounter with PWS was in 1979, when a friend who edited an American magazine "Family Circle - Japanese Version" showed her an article about PWS. She was asked to write an explanation about the characteristics of PWS for the magazine, but how? At that time she did not know anything about PWS. Later as a cytogeneticist, Tomoko have analyzed chromosomes from many individuals with PWS. She has attended International PWS Conferences since the first in 1991. She is a professional delegate for IPWSO, and has cooperated with the parents for organizing the PWSA in Japan.

Hasegawa, Tomoko, M.D.
Genetic Support & Consultation Office, Professional Delegate to IPWSO
2-23-3 Hara-machi, Meguro- ku, Tokyo, 152-0011 JAPAN
hasemokoaol.com

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Heinemann, Janalee

Janalee Heinemann, MSW - parent of an adult son with PWS; masters in social work from Washington University in St Louis, MO; volunteer for PWSA (USA) for 16 years prior to becoming Executive Director in 1997.

Past Professional Experience: Oncology Pediatric Medical Social Worker at St Louis Children's Hospital - 10 yr.; Hospice Social Worker-3 yr.; Child Abuse & Neglect Social Worker - 6 yr.

Achievements: Co-founder of the MO State Chapter of PWS; Wrote chapters for all three editions of Management of PWS; Wrote numerous articles and two booklets on PWS; Presented at twelve national PWS conferences, the international PWSA conferences in Italy and New Zealand, and in several nations including Israel, Taiwan, China, Japan, Mexico, Chile, Monaco, and Brazil. Also presented at various state meetings and conferences; Developed and ran multiple support programs and groups for children with cancer and their families; Developed and lead several bereavement programs.

Honors: "Volunteer of the Year" award, Victim Assistance Program, Sarasota County Sheriff's Office, 2001; President of PWSA (USA), 1991-1994; National PWSA Board Member, 1986-1991; "Service and Rehabilitation Award" from American Cancer Society, 1988; John Krey III award for "Outstanding Humanitarian of the Year", 1991; Dean's Fellowship at Washington University, 1981-1983; Summa Cum Laude, IVCC, 1975; "Volunteer of the Year" award, Illinois Dept of Children and Family Services, 1975.

Janalee Heinemann
Executive Director
941-312-0400
PWSA (USA)
5700 Midnight Pass Rd. Suite 6
Sarasota, FL 34242
execdirpwsausa.org

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Holland, Tony

Tony Holland is a psychiatrist specializing in intellectual disability. He holds a Chair in the Department of Psychiatry at the University of Cambridge, UK and he is President of the UK PWS Association. With colleagues he has published extensively on various aspects of PWS and is co-coordinator of the European PWS research project.

Tony Holland
MBBS, MRCPsych, M.Phil
Douglas House
18b Trumpington Road
Cambridge
CB2 2AH UK
Ajh1008cam.ac.uk

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Korth, Elli

Elli Korth was born in Buenos Aires on the 1st of November of 1952. Her parents are German. She studied in the German school in Buenos Aires, and was raised in the German and Argentine culture. She studied tourism and travel around the world. Knowing people and understanding the way they think where always her interests.

In 1977 she married Alex Korth and in 1982 her first daughter was born, Mariela. She had lack of oxygen and when the neurologist came to see her, he looked at her and diagnosed PWS. This diagnosis could not be confirmed right away as she has unapparent diasomy. And the test did not show deletion. At that time there was no other test available. In 1985 Sofia was born and in 1988 Juan.

At that time with the beginning of Internet (Alex is an expert) they got in touch with the British Assoc. and they informed them about the World Conference in Frambu. After that Conference, they were in touch with IPWSO and either Alex or Elli attended each of the conferences.

In 1998 they started a Shelted Farm and that had to close a few years later due to the Economic situation in Argentina. They still live in the Farm with their children. Mariela loves it. In Minnesota she was elected part of the Board of Directors and has been serving in IPWSO since then, representing Latin America, where they worked hard to start Associations also in other countries.

Elli Korth
Forli 680 Loma Verde
1625 Escobar Argentina
Tel:+ 54 3488 493499
Cel:+ 54 9 11 4035 3241
ellikorthhotmail.com

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Lin, Shuan-Pei

Shaun-Pei Lin is the Director of Division of Genetics, Departments of Pediatrics and Medical Research at Mackay Memorial Hospital.

He is the Assistant Professor of the Department of Infant and Child Care, National Taipei College of Nursing, and Department of Early Childhood Care and Education, Mackay Medicine, Nursing and Management College.

He is a board member of IPWSO, the Taiwan Human Genetics Society, the Taiwan Pediatric Association and Taiwan Foundation for Rare Disorders (TFRD); Medical Consultant of PWSA-Taiwan.

He is a member of the Deliberation Committee for Rare Diseases and Orphan Drugs, Department of Health, Taiwan.

Dr. Shuan-Pei Lin
Department of Pediatrics, Mackay Memorial Hospital
92 Chung-Shan North Road, Sec. 2
Taipei 10449 Taiwan
Tel: 886-2-2543-3535 ext. 3090 - Fax: 886-2-2543-3642

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Lindmark, Marianne

Marianne Helgogaard is a registered Clinical Dietitian, educated at the University of Gothenborg, Sweden and at the University of Oslo, Norway. She has a Masters in Clinical Dietetics from the University of Oslo in Norway.

Marianne Lindmark has been working at Frambu, a National Centre for Rare Disorders in Norway since 2002. At the centre she meets and gives nutritional counseling to families and caregivers of persons with PWS from all over Norway. Since 2003 she has been involved in Frambu's multidisciplinary descriptive study of young children with PWS in Norway. She is the author of the nutritional chapter in the Norwegian booklet, "Prader Willis Syndrome" (2003).

Marianne Lindmark
FRAMBU national centre for rare disorders
Sandbakkeveien 18
1404 Siggerud, Norway
Tel: + 47 64856000
malframbu.no

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Loughnan, Georgina

Georgina Loughnan has worked for Metabolism & Obesity Services, Royal Prince Alfred Hospital, a major teaching hospital in Sydney, Australia, for the past 24 years. Trained as a physiotherapist, for the past 22 years she has treated clients for weight loss management. In 1991, with one client, she began a clinic for adults with Prader-Willi Syndrome. The PWS Clinic has now seen 61 adolescent and adult clients with genetically diagnosed PWS, 40 of whom attend regularly.

The PWS Clinic offers clients full, ongoing medical care under the direction of endocrinologists. Support and training in PWS is given to parents, careers and significant others who are involved with the PWS client. Concentrating on clients with PWS is now the major part of Georgina's work although she still counsels other clients with intellectual disabilities and those with mental illness, for weight management.

Georgina Loughnan
Metabolism & Obesity Services and Prader-Willi Syndrome Clinic
Royal Prince Alfred Hospital
Camperdown NSW, Australia
Tel: 61 2 95154230 - Fax: 61 2 95155820
georgieemail.cs.nsw.gov.au

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Martinsson, Jean Phillips

IPWSO Honorary President, founder, President 1991-1998. Swedish PWSA International Delegate, founder, President 1986-1996. Trustee PWSA (UK) Management Board

Jean's son, Anders, was not diagnosed with PWS until 1984 when he was 14 yrs. old. She was English, married to Sven and living in Sweden - a country with only 9 million people, speaking a language only used by them and a handful of Finns. They were warned that they were probably alone in Sweden with the diagnosis PWS. So, from that day onwards, she set herself the task of discovering other families, even if it meant "going international" to find them. There must be others out there somewhere! Together they would become strong!

Luckily she was working internationally, as she'd done all her working life. For 6 years she worked in Paris, with the OEEC (Organisation for European Economic Cooperation) as Information Officer and English/French interpreter. She even participated in the initial meetings for the creation of the European market. In 1962, as a freelance journalist, she jumped at the opportunity to cover a 3-week assignment in Sweden. She stayed 32 years, having met Sven on a skiing holiday in Romania 41 years ago!

Anders was born in 1970 but, in this land of equal opportunity, She was able to work from home and set up the Cross-Cultural Relations Centre. Amongst the multi-national managers who attended her workshops and lectures to develop cultural awareness and international communication skills were Pharmacia (now Pfizer), Astra and Glaxo. Little did she know how useful these contacts would become! In 1989, her book on the Swedes was published and became a best-seller. This too helped open doors with Swedish subsidiaries around the world.

After her workshops, many of them invited her to stay on in their countries, to give talks about being the mother of a son with PWS, and arranged for her to visit their contacts in hospitals etc. Due to this, she was able, in 1991, to realise her dream. The first International PWS Conference was held in the Netherlands, where some 200 participants gathered and IPWSO was founded. Nobody asked the eternal question "What is PWS? I've never heard of it"!

Jean Phillips-Martinnson
Farthings, 44 Warwick Park
Tunbridge Wells, Kent
TN2 5EF, UK
Tel: 44-(0)1892-549492
jeanpwscompuserve.com
Prader-Willi Association in Sweden (PWSF)

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Moharamzadeh, Désirée

Education and Clinical Care: 2005 - Doctor of Medicine, University Vita-Salute San Raffaele, Milan, Italy. Graduation project on "Progression of Scoliosis in patients with Prader-Willi Syndrome treated with Growth Hormone Therapy" (110/110), under the supervision of Dr. Maurizio de Pellegrin. 2006 - present Resident in Orthopaedics and Traumatology Programme (1st school), University of Milan.

Major Research Fields: 2004 - present Prader-Willi Syndrome: scoliosis progression during treatment with growth hormone - Hospital San Raffaele, Milan.

National and International Congresses: Sept. 2005 - XII National Congress of the Italian Society of Pediatric Orthopedics and Traumatology (SITOP), Anacapri Lecture "La scoliosi nella Sindrome di Prader-Willi".

Désirée Moharamzadeh
Istituto Ortopedico Gaetano Pini
Piazza Cardinal Ferrari 1
Milano, Italy
Tel: +39 339 2068470
desiree.moharamzadehgmail.com

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Murakami, Nobuyuki

Nobuyuki Murakami M.D., Ph.D
Department of Pediatrics, Dokkyo Medical University
Koshigaya Hospital
2-1-50 Minami-Koshigaya
Koshigaya, Saitama 343-8555, Japan
nobuyukidokkyomed.ac.jp

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Nadal, Mariona

Mariona Nadal (Barcelona 1980) is the sister of two children, the youngest with PWS (born 1998, diagnosed 2002). She is a Software Engineer graduated from the Polytechnic University of Madrid (1998-2003) and an Expert in Web Accessibility and Usability by the University of Alcalá de Henares (2005-2006). Professional experience: Software engineer, in several companies, since 2003. Programmer, in several companies, 2001-2003.

She has been a volunteer and member of the Board of the Prader-Willi Syndrome Association from Madrid, Spain (AMSPW) since 2004. Related achievements: Delegated of Technology and Communications of the AMSPW. Voluntary instructor in the activities "Fridays' Workshops", "Leisure and Free Time", "Course of Computer Alphabetisation" and "Kiddies to Play" of the AMSPW. She is the Webmaster of the Web site www.amspw.org. She is a co-writer, designer and editor of the Web site www.amspw.org, the quarterly bulletins amspw.org, leaflets, posters and brochures elaborated by the AMSPW.

Lectures "Internet: Virtual Prader-Willi" and "Activities: the importance of contact between families" at the National PWS Conference of Chile (2006). Collaborator in the lectures presented by the AMSPW in the IV Latin-American PWS Conference, Buenos Aires: "Pilot Experience of Animated Therapy" (Buenos Aires, Argentina, 2005) and in III Rare Diseases and Orphan Drugs Conference: "Virtual Support Groups" (Mendoza, Argentina, 2006). Related honors: Honorary Mention in the Prizes Bip Bip 2006. She was a finalist in the Prizes Day of Internet 2005.

Mariona Nadal
Asociación Madrileña para el Síndrome de Prader-Willi (AMSPW)
C/ Las Naciones 15, 4º Iz.
28006 Madrid, Spain
Tel: (+34) 91 435 22 50
webmasteramspw.org

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Nagai, Toshiro

Toshiro Nagai M.D., Ph.D
2-1-50 Minamikoshigaya Koshigaya Saitama
343-0555, Japan
t-nagaidokkyomed.ac.jp

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Østergaard, Grethe

Grethe Østergaard is a social education worker who graduated from school in 1989. Since then, she has been working solely with physically, mentally and socially handicapped persons.

In 1999 she was a part of a team that established a group home for five young adults with PWS. In 2003 they built a new house especially for people with PWS. The house is designed to meet the demands of people with PWS as much as possible. It is the only PWS - group home in Denmark. Living in the home, there are 8 clients between the ages of 18 and 31. There are 12 employees taking care of the group. Since 2002 Grethe Østergaard has been the manager of the house.

Grethe Østergaard
"Grankoglen"
Region Midt, Denmark

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Parisse-Brassens, Jerome

Jerome Parisse-Brassens joined Eurordis, the European Organisation for Rare Diseases, in 2005 to be in charge of communication and development. Jerome is a communication and organisational development specialist who has been advocating for patient rights for many years, initially for the Deaf and the hearing impaired, and more recently for people living with rare diseases. Prior to joining Eurordis, Jerome taught project management at the University of New South Wales, Sydney, Australia, and worked as a management and organisation consultant. He has been involved in a wide range of projects in Europe, Australia and America. Jerome is a French and Australian national, with wide experience in multicultural environments.

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Plooy, Rika du

Rika du Plooy majored in Speech Therapy and Audiology from the University of Pretoria (South Africa) in 1968. She was a tutor at the same University until 1980. Rika is married to Izak and they have a twenty-four year old daughter with Prader-Willi Syndrome. Rika has been involved in the PWS Association of South Africa since it was established in 1990. She is currently the chairperson of the association and also parent delegate to IPWSO.

Rika du Plooy
267 Middelberg Street
Muckleneuk
0002 Pretoria, South Africa
Tel/Fax: +27 (0) 123440241
rikadupmweb.co.za

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Puiu, Maria

In 1985, Maria obtained her MD from the Medical University in Timisoara, Romania and then her PhD in 1994 from the University of Medicine and Pharmacy in Bucharest, Romania. She then went on to get her specialist degrees in pediatric medicine from Clinical Pediatrics (Romania) and medical genetics from Gr. Alexandrescu Hospital (Romania). Maria followed these degrees with a fellowship in clinical genetics and prenatal cytogenetics at Hospices Civiles de Lyon (France).

Maria is a member of Romanian Society of Medical Genetics (SRGM), a member of European Society of Human Genetics (ESHG) and an Expert Evaluater CNCSIS, VIASAN, CEEX. She has also done research on the optimization of diagnosis and management of patients with mental retardation by introducing the MLPA test in the evaluation protocol; the impact on the quality of life of functional food with bioactive antioxidant components in breast.

She also worked for the Romanian National Alliance for Rare Diseases (RONARD) and studied management optimization for children with Lymphoblastic Acute Leukemia by using molecular cytogenetics technics (FISH).

Maria Puiu
Department of Medical Genetics
University of Medicine and Pharmacy Victor Babes
Timisoara, Piata E. Murgu nr. 2, 300041, Romania
Tel/Fax. (work): +40-256-220-479
maria_puiuumft.ro

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Rabben, Kai Fr.

Kai Fr. Rabben was born in Oslo, Norway in 1951. In 1971, he graduated college and then, in 1979, obtained his medical education at Vrije Universiteit in Brussels, Belgium. Between 1981 and 1987, Kai worked as a pediatrician specialist for hospitals in LidkÓping, Sweden and Kärnsjukhuset in Skövde, Sweden. In the mean time, Kai obtained his pediatrician practicing licenses in both Sweden and Norway.

Kai also has experience in child and adolescent psychiatry and has studied the medicine of infectious diseases in both Lidkøping and Skövde (Sweden). He was also a consulting physician at the children's hospital in Skövde, Sweden until 1987. After which he became a pediatrician, and later the chief physician, at the hospital in Kristiansund, Norway from 1987 until 1995. Following that, Kai was employed as pediatric consultant at Frambu, a national center for rare disorders in Norway.

Kai is also a member of the advisory board for the Norwegian PWS association, and a member of the Norwegian project team of "Joint Nordic Study on the Effects of Growth Hormone Treatment in Adult Patients with Prader-Willi Syndrome." He is also the co-author of a Norwegian book publication about PWS.

Kai Fr. Rabben, MD
Address (work): Frambu, Sandbakkveien 18, N-1404 Siggerud, Norway
Address (private): Monsrudveien 8A, N-1400 Ski, Norway
Tel. (work): +47 64856000
Tel. (private): +47 90111819
kraframbu.no
kfrabbenbroadpark.no

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Ritzén, Professor Martin

Paediatric Endocrinology, Karolinska Institute, Stockholm, Sweden. Professor emeritus

Active research interests particularly those relevant to PWS: Professor Ritzén is a paediatric endocrinologist whose primary research interests is in steroid hormones and growth. He initiated the first randomized controlled study of GH treatment of children with PWS, the results of which laid the ground for acceptance of PWS as a legitimate indication for GH prescription in large parts of the world. Along with his coworkers, other effects of GH treatment than growth have also been studied, such at respiration, body composition, glucose metabolism, a.o.

He is the founder of the paediatric endocrinology unit at the Karolinska Hospital, past member and chairman of the Medical Nobel Council, assoc. editor of Acta Paediatrica, a.o.

Karolinska University Hospital
Q2:08 SE 171 76
Stockholm, Sweden
Tel: +46 8 5177 2465
Fax: +46 8 5177 5128
martin.ritzenki.se

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Silvast, Tiina

Tiina Silvast is the mother of 26 year Vappu, who has Prader-Willi syndrome. Vappu is still living at home. In 1993, Tiina was one of the few people who helped to found a Prader-Willi association in Finland. Since 1995, she has been president of the association. During many years she got to know a great number of PWS people, most of them in the summer camps the association arranges for PWS people every year. Tinna and her husband have been the leaders of the camps for 10 summers. She is proud to have many Prader-Willi people as friends. At some point, Tiina also started to lecture in group homes about PWS, especially about PWS behavior and its management as there wasn't any professional specialized in PWS behavior in Finland, and still isn't.

Now, through her own company, Tiina lectures and educates others about Prader-Willi as part of her work. She lectures mostly to professionals, but also to Prader-Willi families and families with Prader-Willi children. She is also a graphic designer and designed the IPWSO logo in 1998.

Tiina Silvast
Prader-Willi Association Finland
Teekkarinkatu 15 B 17, 33720 Tampere, Finland
Tel. +358 400 84 75 76
silvast.pwselisanet.fi

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Stefanov, Assoc. Prof. Dr. Rumen

Rumen Stefanov is the founder of the Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) in Bulgaria and an associate professor in public health and health management at the Medical University of Plovdiv (Bulgaria). He is a Specialist in epidemiology and clinical trials on small populations. Dr. Stefanov has more than 6 years professional experience in rare diseases, being a Marie Curie fellow at the Mario Negri Institute (Italy) under the Program of EC "Quality of life and management of living resources" in 2001. In 2003 - 2004 he was a visiting scientist at the Coordinating Centre for Rare Diseases (Mario Negri Institute for Pharmacological Research, Italy).

Dr. Stefanov is a reviewer at the Cochrane Renal Group (Australia), member of the Task Force on Rare Diseases at DG SANCO (EC, Luxembourg) and board member of the Central & Eastern European Genetic Network (CEE GN). He is a chairperson of the working group formed by the Minister of Health of Bulgaria for establishment of National Program on Rare Disease (2007-2011). Dr. Rumen Stefanov is fluent in English, Italian, Russian and Bulgarian (native) languages and has more than 35 scientific publications in leading Bulgarian and international medical journals.

Assoc.Prof. Rumen Stefanov, MD, PhD
Information Centre for Rare Diseases and Orphan Drugs (ICRDOD)
A project of the Bulgarian Association for Promotion of Education and Science
Office 46, Hall 7-East, International Plovdiv Fair
4000 Plovdiv, Bulgaria
stefanovraredis.org

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Stegmann, Jorgelina

Dr. Jorgelina Stegmann is a medical doctor from Argentina. She is a specialist in Internal Medicine, with a particular focus in psychoimmunoneuroendocrinology.

Jorgelina works with adolescents and adults with PWS and is the president of a SPINE Foundation in Argentina. She coordinates a group of seven professionals from different disciplines: nutrition, rehabilitation, psychology, psycho pedagogy, education, etc. Together, they do multidisciplinary work with families with people with PWS.

Fundacion SPINE
Araoz 2471 2"9" piso
C1425EFF - Ciudad de Buenos Aires - Argentina
Tel: (0054)11 48 22 10 61 - (0054)11 48 22 07 64
fundacionspinegmail.com
jstegmannspine.org.ar

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Steinbeck, Kate

Kate Steinbeck is the Director of the Metabolism & Obesity Services at Royal Prince Alfred Hospital, Sydney where the first adult & adolescent Prader Willi Clinic in Australia was established. She is also involved in Prader Willi research including cardiovascular risk, appetite hormones and the behavioral effects of HRT. Professor Steinbeck is a past President of the Australasian Society for the Study of Obesity (ASSO). She was co-chair for the International Congress of Obesity held in Sydney in September 2006 and serves on a number of Committees for the International Association for the Study of Obesity. She is a pediatric associate editor of the International Journal of Obesity and associate editor for the International Journal of Pediatric Obesity.

A/Prof Kate Steinbeck
Endocrinology and Adolescent Medicine
Tel: Int 612 9515 9261
Fax: Int 612 9515 9266

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Taruscio, Domenica

Director of Rare Disease Unit (ISS), Scientific Responsible of the National Center Rare Diseases (Istituto Superiore di Sanità)

Domenica Taruscio, director of the Italian National Centre Rare Diseases, is a M.D. pathologist, specilized in bioethic and genetics; her efforts are directed mainly to tackle rare diseases from science to society.

Since 2000 she is the Italian Member to the Orphan Drug Committee (COMP) at the European Drug Agency (EMEA); the Italian contact point for the OECD for the quality assurance of genetic testing.

In particular, 1989-91 underwent post-doctoral training at the Dept. of Human Genetics - Yale University (New Haven, USA) and, from 1992 to 1994 was a visiting researcher at the Dept. of Pathology - Columbia University (New York, USA). She is currently responsible for the National Centre for Rare Diseases at the Istituto Superiore di Sanita' (Rome, Italy).

She is member of the following national and international working Groups and Committes:

• (2000 - today) OECD Contact Point for "Genetic Testing Regulation in Italy"
• (2000 - 2009) Italian Member of Committee for Orphan Medical Products-COMP (EMEA)
• (2001 - ) Italian Member of OECD Steering Committee on Genetic Tests
• (2002 - today) Member of the Italian National Committee on Genetic testing of the Italian Ministry of Health
• (2002 - today) Member of the Italian National Committee on "Task Force on rare diseases" of the Italian Ministry of Health
• (2002 - ) Scientific expert at the Italian Commission on Drugs (CUF)

She is the Scientific Coordinator of a number of national and international projects on rare diseases, the local organizer of the WHO-Europe meeting on folic acid and birth defects (Rome, ISS, 2002) and, in particular the Scientific Coordinator of the project NEPHIRD (Network of Public Health Institutions on Rare Diseases) funded by the EU Commission (DG-SANCO).

She is the Italian Member at the Committee on Orphan Medicinal Products (COMP) at the EMEA. She is a member of the Task Force on Rare Diseases (DG-Sanco), an OECD expert (genetic testing), member of the European Molecular Genetics Quality Network management board, and of the advisory board of Eurogentest (NoE). She is co-author of several scientific publications.

Domenica Taruscio
Viale Regina Elena
299 - 00161 Rome-Italy
Tel: +39 06 49904016
Fax: +39 06 49904370
Istituto Superiore di Sanità (ISS)
taruscioiss.it

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Tseng, Min-Chieh

Dr. Min-Chieh Tseng received his Ph.D. in Sociology at the University of Wisconsin-Madison, U.S. and in 1991 he received his M.S. in Sociology, University of Wisconsin-Madison, U.S.

He has been employed since 2003 as an Associate Professor, Dep't of Social Work, at National Taipei University in Taiwan. He is also the Vice President of the Taiwan Foundation for Rare Disorders, Taiwan.

He has worked in public service as a member of the Committee for Protecting the Handicapped, Ministry of Interior, in Taiwan, and a member of Committee on Rare Diseases and Orphan Drug, Department of Health, in Taiwan.

From 1999-2005 he was the Executive Director of the Taiwan Foundation for Rare Disorders. From 2001-2005, he was the Deputy Executive Director of the Taiwan Health Reform Foundation, and from 1997-2003, he was an Associate Professor, Department of Labor Relations, National Chung Cheng University in Taiwan.

In 2006 he received the Public Service Award from the Department of Health in Taiwan, and in 2004, he was the recipient of a Fulbright Scholarship, in the US.

Dr. Min-Chieh Tseng
Tel: 886-2-25210717 Exit 103
Fax: 886-2-25673560
mctsengmail.ntpu.edu.tw
ex01tfrd.org.tw

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Vogels, Annick

Annick Vogels obtained her Medical Degree at the Catholic University of Leuven (Belgium). She had her training in child psychiatry at the University Hospital of Leuven and at the Royal Hospital for sick children in Bristol. She is a child psychiatrist at the Department for Human Genetics at the University Hospital of Leuven where she is specialized in children and adults with a genetic disorders and psychiatric problems. In 2001, she completed her PhD on "Psychosis in Prader-Willi Syndrome" at the Catholic University of Leuven. She is an international researcher on the topic of psychiatric problems in genetic syndromes specifically on PWS.

Annick is a board member of the Flemish PWS association, and the professional delegate to the International PWS organization of the Flemish PWS association and a member of the "Conseil Scientifique Prader-Willi France". She is an active member of the European Consortium on Prader-Willi Syndrome. She is the coordinator of the multidisciplinary clinic for Prader-Willi patients in Leuven and has a long term follow-up of more than 50 Prader-Willi patients.

Annick Vogels M.D. Ph.D.
Department of Human Genetics
University Hospital of Leuven
Herestraat 46
3000 Leuven, Belgium
Annick.Vogelsuzleuven.ac.be

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Waters, Jackie

Jackie Waters is the mother of a 29 year old woman with PWS who lives with her at home. She is Deputy Chief Executive of the Prader-Willi Syndrome Association (UK), and has been with the Association, first as a trustee and then as a paid worker, since 1987. She has written several books and articles about PWS, mostly for parents, some of which have been translated into other languages. She is also responsible for the PWSA (UK) News magazine and website, as well as organizing training days and conferences.

Jackie Waters
PWSA (UK)
125a London Road
Derby DE1 2QQ
Tel: +44 1332 365676
jwaterspwsa.co.uk

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Whitman, Barbara Y.

Barbara Y. Whitman, Ph.D.
Saint Louis University Department of Pediatrics
Cardinal Glennon Children´s Medical Center
1465 S. Grand
St. Louis, MO 63104
Whitmanbslu.edu

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