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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: Rating (Highest Scores to Lowest Scores)
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: 464 Rating: 10.0 (1 Vote)
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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: 483 Rating: 9.0 (1 Vote)
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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: 1677 Rating: 6.0 (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: 472
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Paroxysmale Nächtliche Hämoglobinurie
Description: German PNH site. For patients from patients.
Added on: 30-Oct-2003 Hits: 440
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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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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: 367
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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: 414
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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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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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