Networks
The International Huntington Association (IHA) is a federation of national voluntary health agencies that share common concern for individuals with Huntington’s Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support; psycho-social, clinical and biomedical research; and ethical and legal considerations related to Huntington’s Disease...
International Myeloma Foundation
The International Niemann Pick Disease Alliance (INPDA) is a global network of non-profit organisations, supporting persons affected by Niemann Pick Diseases (NPD). The alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD.
The decision to create the International Patient Organisation for Primary Immunodeficiencies (IPOPI), emanates from an interim organising committee meeting in Oxford, UK, in 1990. Two years later, in 1992, IPOPI was formally established in Lugano, Switzerland. The small group of representatives from the primary immunodeficiency (PID) community who met in...
The International Pompe Association (IPA) is a federation of Pompe disease patient’s groups. Paula Waddell, c/o VSN Luitenant Generaal van Heutszlaan 6 3743 JN Baarn Netherlands Telephone: +31(35)5480480 Fax: +31(35)5480499 E-mail: [email protected] Website: http://www.worldpompe.org/
IPWSO is the international non-profit support group for all countries where there is even just one person with Prader-Willi Syndrome! Our international umbrella supports all country PW Associations, and for all countries where there are no formal PW Associations, we support medical and parent delegates as part of our huge...
The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)Support everyone affected by Waldenstrom’s macroglobulinemia while advancing the search for a cure 6144 Clark Center Ave. Sarasota, FL 34238 Telephone: 941-927-4963 Fax: 941-927-4467 E-mail: [email protected]: http://www.iwmf.com/
The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and funding of research that will...