Online PNH Resources

The PNH Patient Community

The PNH Patient Community is a patient support site in partnership with National Organization for Rare Disorders (NORD) and the Aplastic Anemia & MDS International Foundation (AA-MDSIF). This site is dedicated to providing PNH patients access to other patients as well as many free events offered throughout the country.

National Organization for Rare Disorders (NORD)

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NORD is dedicated to helping improve the lives of people with rare diseases through advocacy and by
serving as a clearinghouse for news, information about research and grants, and patient services and
resources.

Aplastic Anemia & MDS International Foundation (AA-MDSIF)

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AA-MDSIF is a nonprofit patient organization that serves as a resource for patient assistance, advocacy, and support. The organization supports research to find treatments and potential cures for aplastic anemia (AA), myelodysplastic syndromes (MDS), and related bone marrow diseases including PNH. The
AA-MDSIF Web site provides educational materials and medical information about AA, MDS, and PNH.

National Institutes of Health (NIH)

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On this site, you can search a collection of clinical studies being conducted by the NIH.

PNH Research and Support Foundation

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The PNH Research and Support Foundation is an organization dedicated to raising funds for PNH research and helping families with disease-related expenses not covered by insurance.

PNH Support Group

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The PNH Support Group is an online network of over 400 individuals who are living with PNH, or care for someone with PNH, and who are willing to share personal experiences. Other resources include frequently asked questions, live chat forums, current news threads, a PNH glossary, key links, and educational
materials.

ClinicalTrials.gov

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On this site, healthcare professionals and others can review regularly updated information about federally and privately supported clinical research in human volunteers. This site also gives you the ability to research information about a trial’s purpose, who may participate, locations, and contact information.