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Donations can be made for PNH Research through the AAMDS Website
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Under "This gift is made in honor of", please put "PNH Research"
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PNH Research and Support Foundation Referral program with amazon.com
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Category: Main/Support Organizations
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Sites currently sorted by: Title (Z to A)
Walk for PNH
Description: Information on a fundraising walk for PNH to be held in Riverview Florida April 1 2006.
Added on: 21-Apr-2006 Hits: 1556
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The Myelodysplastic Syndromes Foundation
Description: The MDS Foundation is a multi disciplinary, international organization devoted to the prevention, treatment, and study of the myelodysplastic syndromes.
Added on: 15-Nov-2003 Hits: 340
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PNHziekte · De zeldzame bloedziekten AA en PNH
Description: Dutch email support group for aplastic anemia and PNH.
Added on: 30-Oct-2003 Hits: 653
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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: 413
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Paroxysmale Nächtliche Hämoglobinurie
Description: German PNH site. For patients from patients.
Added on: 30-Oct-2003 Hits: 439
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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: 413
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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: 366
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marrowforums.org 
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: 5335
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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: 482 Rating: 9.0 (1 Vote)
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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: 484
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