“Concentrate on the Positive Aspects of PWS”

1. “Concentrate on the Positive Aspects of PWS” 6th International Prader Willi Syndrome Conference/ 1st Romanian Rare Disease Conference 21-24 June 2007, Cluj Napoca, Romania CONFERENCE REPORT

2. The 6th International Prader Willi Syndrome Conference, including the 1st Romanian Rare Disease Conference took place in June 21-24, in Cluj Napoca, Romania—at the Medical University Iuliu Hatieganu. As organizers, the Romanian Prader Willi Association would like to thank all those who attended this conference as well as all those who helped us make this event happened. Conference chairs: Pam Eisen – president IPWSO Dorica Dan – president RPWA

3. SCIENTIFIC PROGRAMME • Co-Organizers • Anthony J. Holland,MBBS, MRCPsych, M.Phil (UK) • Suzanne B. Cassidy, MD (USA) • Scientific Advisory Committee • Daniel J. Driscoll, MD, PhD (USA) • Elisabeth M. Dykens, PhD (USA) • Anthony P. Goldstone, MA, MRCP, PhD (UK) • Bernhard Horsthemke, PhD (Germany) • Françoise Muscatelli, PhD (France) • Lenuta Popa, MD, PhD (Romania) • Professionals all over the world had a chance to share their research and planted the seed of possibility for the future. During an open question and comment session on 22 June, interest was placed on possible future research determining if other genes interacted with chromosome 15 to promote the effects of PWS. • Thoughts were also provided about proposing a study on scoliosis specific to PWS patients. Other topics included observing the mental and behavioral changes in children with PWS, the need for adequate control, better sleep research in PWS patients, and the use of growth hormone.

4. STATISTIC INFORMATION: No. of participants: 150 No. of speakers: 25 No. of presentations: 22 No. of posters: 23 21-22 June

5. CARETAKERS/ASSOCIATIONS PROGRAMME • Co-Organizers • Dr. Hubert Soyer- Chair (Germany) • N. Hödebeck-Stuntebeck- Chair (Germany) • Jackie Mallow- Chair (USA) • The morning session included representatives from the United States, the United Kingdom, and Germany discussing what each of their countries had to offer. Group homes, though available in each of the three countries, presented different programs ranging from charity funded, mixed disability homes to sheltered workshop facilities. • However, organizations and associations are not necessarily funded by the government so how might they fund their program? In presentations from the United Kingdom, Finland, and Germany revealed that a variety of fundraising means helped these organizations to perpetuate their objectives. • In the afternoon, presentations on IPWSO’s growth and development, and the fast-growing Romanian PWS Association. Despite going international as little as ten years ago, IPWSO has grown to 75 countries with some associations even able to provide free blood testing to other, low income countries.

6. Cluj-Napoca, Romania June 22-23, 2007 • STATISTIC INFORMATION • No. of participants: 100 • No. of speakers: 21 • No. of presentations: 21

7. PARENTS AND PROFESSIONALS PROGRAMME • Co-Organizers • Susanne Blichfeldt, MD- Chair (Denmark) • Dorica Dan- Chair (Romania) • Pamela Eisen- IPWSO President, Chair (USA) • The support and care of family, friends, and professionals play the most important roles in a person whose life is ruled by PWS. Presentations from each of these perspectives spanning two days offered a similar theme and a strong drive toward that love and support on all fronts. From a heartfelt presentation of a sibling living with a sister who has PWS to presentations depicting the latest research on management of certaincharacteristics of the disease, all those who attended left the conference with a better network of knowledge and kinship. • Many of the more technical presentations (from BIRD-Italy, USA, Australia, Norway, Denmark, Japan, and Taiwan) focused on such features associated with PWS as scoliosis, growth hormone treatments, and educational environments. At the end of the second day, parents had a chance to offer their specific experiences which circled around a theme of “communication”. But as Jackie Mallow of the United States declared, “At the end of the day, a ‘thank you’ goes a long way.”

8. Cluj-Napoca, Romania June 23, 2007 • STATISTIC INFORMATION • No. of participants: 250 • No. of speakers/moderators: 70 • No. of presentations: 43 • No. of workshops: 23

9. CHILDREN’S PROGRAMME • While delegates attended session after session about their health and futures, the Children’s Program was busy having a great time! The first morning was spent in the beautiful Botanical Gardens of Cluj only be followed by an afternoon of crafts and games. A showing of Ice Age and a roaring game of dominoes turned out to be a group hit! The next day, rain could not keep them down as a guitar lead sing-along lifted everyone’s spirits. The afternoon was certainly not a washout with a trip to the park and playground. Ages ranged from 3 to 37 years while the countries of Japan, Spain, Sweden, Romania, Netherlands, UK and Moldova were represented, providing a truly international experience!

10. June 22 -23 • STATISTIC INFORMATION • No. of PWS participants: 13 • No. of caretakers/volunteers: 20

11. RARE DISEASE PROGRAMME • STATISTIC INFORMATION • No. of participants: 100 • No. of presentations: 24 • No. of speakers: 24 • Representatives of international and European bodies, like IPWSO, EURORDIS, ORPHANET, BAPES, BIRD, RPWA, TFRD – made presentations on the situation of rare diseases and orphan drugs in the world, in Europe, in Romania and other countries. Another special moment during this day was the official launch of the first book written in Romanian on rare diseases, called ESSENTIAL IN 101 RARE DISEASES, a book published with the support of the Central and Eastern European Trust, where 49 Romanian specialists, patients and patient organization representatives wrote various articles on rare diseases.

12. Cluj-Napoca, Romania June 24, 2007 • Rare Diseases Scientific Advisory Committee • Christel Nourissier - EURORDIS • Conf. Dr. Maria-Julieta Puiu – UMF Timisoara • Pr Rumen Stefanov-- Plovdiv, Bulgaria • Prof. Domenica Taruscio- Instituto Superiore di Sanita, Italy • Dr Cristina Skrypnyk- Children Hospital Oradea • Prof. Dr. Cristina Borzan – Sanatate Publica • Dr Min Chieh Tseng- Taiwan (TFRD)

13. The 6th International Prader Willi Syndrome Conference brought together 348 participants from 38 countries. Nothing would be done without their help… Thank you all our sponsors! GENERAL STATISTIC INFORMATION

14. SPECIAL THANKS TO: • Pam Eisen – Conference chair, president IPWSO • Giorgio Fornasier- IPWSO Director of Program Development • Christel Nourissier – EURORDIS, Rare Diseases Conference Cha • Suzanne B. Cassidy, MD (USA), Anthony J. Holland, MBBS, MRCPsych, M.Phil (UK) and Susanne Blichfeldt, MD- Chair (Denmark) • Autumn Henderson – PCV / APWR • Etelka Czondi – PR APWR • Heinrich Schnattman – International BSW Germany • Kindness for Kids Germany • Michele Carnessali - Transimont • Pfizer International • Jim and Joan Gardner – sponsors and committee organizers • CEE Trust • Simbotours Travel Agent, Satu- Mare • Nemar Catering Cluj- Napoca • Tiberiu Dan- Executive Director RPWA • All the speakers, professionals, parents and volunteers involved, THANK YOU! • Dorica Dan – president RPWA