The Communication between IPWSO and TFRD

From Romania to Taiwan: The Communication between IPWSO and TFRD International Prader-Willi Syndrome Organization (IPWSO) is an international organization, whose members are the national Prader-Willi Syndrome Associations. Currently, it has 54 member and associate member countries. IPWSO holds a general assembly and conference every three years. The participators include medical professionals, member delegates and government health police represents for about 400 persons from more than 50 countries. 

In 2003, the managing director of IPWSO, Ms. Pamela Faith Eisen, and the director of PWSA (USA), Janalee Heinemann, visited Taiwan to share there experience about taking care PWS patients with our medical professionals and patient families. Furthermore, both Ms. Eisen and Mrs. Heinemann was accompanied by the director of TFRD to visit the manager of Bureau of National Health Insurance (NHI) to persuade it to cover the expenses for PWS patients’ growth hormone. Taiwan NHI finally reimburses the growth hormone for PWS patients from May 2004. 

In 2004, Dr. Shuan-Pei Lin, a board director of TFRD, was elected as a Board Member & Special Medical Advisor for Asia in IPSWO, and now he is the Vice President of IPWSO. Taiwan PWS association was also established in 2004. For more understanding the treatment situation of PWS patients in China, vice president of TFRD, Dr. Min-Chieh Tseng, and president of IPWSO, Ms. Eisen, visited Peking Union Medical College Hospital in 2005. 

This year, the 6th IPWSO general assembly and conference are held from June 21 to 24 in Romania. The purpose of this conference is to enpower patient’s right in Eastern Europe. The conference is held for 4 days including three-day PWS workshops and one-day rare disease workshops. In the first three days, the conference focuses on the latest research and treatment on Prader-Willi Syndrome, patient groups operation experience, parents’ caring experience, how homes for PWS patients work and IPWSO’s annual report. As for the last day, the conference focuses on rare disease issues, most of which are about European governments’ policy on rare diseases, professional viewpoints and development on managing rare diseases (in Romania, Bulgaria, Italy, and France), patients and patient groups’ role (such as IPWSO, EURORDIS, TFRD) 

Dr. Tseng is invited as a speaker for the section of rare disease conference. The subject of Dr. Tseng’s speech is “The Development of Policies on Rare Diseases in East Asia: The Examples of Japan, Korea, and Taiwan”. From this subject, Dr. Tseng hopes to help others more realize about the rare disease police and current situation in Asia. 

In this conference, Dr. Shuan-Pei Lin, on behalf of Taiwan PWS association won the bid to host 7th IPWSO conference. Taiwan PWS association, despite of being young, has already been a well-organized association, and will do its best to make this conference a successful one. TFRD will also assist them on this important event.