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Category: Main/Support Organizations


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AA-PNH Info 
Description: Experiences, Informations and suggestions for people concerned with AA and/or PNH. Integrated forum for exchanges and interactions between concerned. For German-Speakers.
Added on: 23-May-2005 Hits: 3379 Rating: 6.0 (1 Vote)
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Aplastic Anemia & MDS International Foundation, Inc. 
Description: AA&MDSIF serves as a resource for patient assistance, advocacy, and support; provides educational materials and medical information; and supports research to find treatments and cure for Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), and related bone marrow diseases.
Added on: 19-Oct-2003 Hits: 1094 Rating: 10.0 (1 Vote)
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Aplastic Anemia and Myelodysplasia Association of Canada 
Description: Canadian support network for patients, families and medical professionals dealing with aplastic anemia, myelodysplasia, or PNH.
Added on: 19-Oct-2003 Hits: 1804
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Aplastische Anaemie e.V. 
Description: Disease information, news and field reports about aplastic anaemia and different aplastic anaemia disease forms (including PNH, MDS) for the German speaking area.
Added on: 29-Dec-2003 Hits: 1377
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L' Hemoglobinurie Paroxystique Nocturne 
Description: First French website only dedicated to PNH, with worldwide interesting links and medical publications.
Added on: 30-Oct-2003 Hits: 1218 Rating: 9.0 (1 Vote)
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marrowforums.org  Popular
Description: At marrowforums, patients and their families, friends, and caregivers assist and support each other through discussion and sharing. The diseases are rare, but the patients and those who care about them are not alone!
Added on: 05-Feb-2007 Hits: 25881
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National Organization for Rare Disorders (NORD) 
Description: The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Added on: 30-Oct-2003 Hits: 1035
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Office of Rare Diseases (at NIH) 
Description: Information about ORD-sponsored scientific activities, an ORD cosponsored genetic and rare diseases information center, and a portal to databases that provide information on major topics of interest in rare diseases research.
Added on: 02-Nov-2003 Hits: 1156
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Paroxysmale Nächtliche Hämoglobinurie 
Description: German PNH site. For patients from patients.
Added on: 30-Oct-2003 Hits: 1204
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PNH en AA en algemene info over andere bloedziekten 
Description: Dutch AA and PNH website.
Added on: 02-Nov-2003 Hits: 1163
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