About Us

In 1991, the first International Prader-Willi Syndrome Conference was held in the Netherlands and a few days later the International PWS Organization, representing 22 national associations, officially formed and originally registered in Sweden . Since then, we have grown in size and in dimension of services, now representing 100 member associations.  The history of our formation written by Jean Phillips-Martinsson, can be found by clicking here.

IPWSO's mission is to raise the quality of life for all people with Prader-Willi Syndrome and their families. Financed by subscriptions from member associations, by donations, and grants, IPWSO is a non-profit organization, run by volunteers, with two part-time consultants, our Chief Executive and Secretary/Communications.

IPWSO fosters the formation of new associations throughout the world. To qualify as a member of IPWSO, a nation needs only one parent delegate and one professional delegate. Although this requirement sounds simple, in some countries, this is not a reality. One desperate mother wrote that she was going to kill herself because she could not find a single doctor in her country who knew anything about the syndrome. She had no hope for her newly diagnosed child, until we helped her find an interested physician. In one country, where the government does not allow Parent Associations, we have two professional delegates. Another association has a parent delegate who lives in another. Our flexibility, to include all nations, also extends to the annual fee, based on membership, with a minimum fee of USD50. Given the actuality of our emerging associations, this fee is often not attainable, so we also offer an associate membership, with no fee. IPWSO's heart extends to all people with PWS without discrimination.

Education is the key to our objective of early diagnosis and early management of the syndrome. We strive to meet this goal by providing printed educational material in a multitude of languages to families and professionals. Global distribution of three educational packages (General Awareness, Medical, and Crisis) in a multitude of languages has been a significant accomplishment for IPWSO. Since less than half of our associations have publications, these precious packets represent the gateway to a better life for their children. In the past few years, we distributed 7,000 Educational packets in English and other languages. We dispersed an additional 5,000 IPWSO Educational Packages in Spanish throughout Spain , Latin America , and the United States . PWS related educational materials from around the world are available to our members at no cost, including Medical Alert Booklets and the "Food Behavior and Beyond" DVD, which is a joint project of PWSA (USA) and IPWSO. We encourage initial national and continual regional conferences, providing support in programming and supplying speakers. Education extends into lectures at medical schools and hospitals and includes PWS Awareness Booths at major medical conferences where we distribute educational material such as our Medical Management DVD and Growth Hormone Book. In 2005, IPWSO sponsored the first Prader-Will Syndrome 3 day training meeting for physicians at the Peking Union Medical College Hospital in China . Our website (www.ipwso.org) opens the doors to our multilingual websites throughout the world. We are proud to hold educational courses for professionals including PWS Group Work for Psychologists and PWS Diagnostic Training.

One of the most important goals of IPWSO is to provide an international forum for scientists and multidisciplinary professionals. In addition to encouraging and facilitating a global network of research and services, IPWSO holds an international conference every three years. We provide free diagnosis, and sometimes an initial medical evaluation, for families living in countries where the facilities and training does not exist. In countries where GHT and other medical services are not covered by the government (more than half of our membership), IPWSO assists member associations in lobbying for this right. Even in the most remote places in the world, IPWSO has provided legal and medical services for people with PWS in crisis.

IPWSO responds to the needs of our members. Now faced with a recently diagnosed older population, many of our nations are requesting help in developing respite services, group homes, supportive living, rehab services, multidisciplinary clinics, group homes, and supportive living options. IPWSO is assisting these countries in gathering information on the existing services provided in our older established nations. There are many positive approaches to the same challenges. By exchanging information among countries, we can present many options for associations to choose and adapt to the financial and cultural realities of their country. From June 3-5, 2007 , the First IPWSO International Conference for Caretaker's will take place in Germany , with focus on the successful approaches

IPWSO Opening Doors

Each IPWSO association is at a different stage of maturity and represents a distinctive cultural approach. This unity and diversity of our membership is the beauty of IPWSO, for when our unique experiences blend together they generate a much richer force than any member alone can possess. By sharing and connecting, we have created a network of overwhelming power that moves people's hearts and enhances countless lives.

Support and collaboration from our oldest to our youngest associations is vital to our international PWS family. Although IPWSO members speak many different languages, the universal words, "love for our children," expresses our mission. The rarity of a disorder has no relevance to a parent. Until we discover prevention or a cure, we must find better methods of management and share this information. Each life we save makes all the difference.

Annual Reports