Alexion Pharmaceuticals
http://www.alexionpharm.com
Since its founding by scientists from Yale University, other research universities, and the pharmaceutical industry, Alexion has had a determined focus on translating cutting-edge science into novel, therapeutic biotechnology products. Alexion is also the sponsor of PNHSource.com and the PNH Registry.
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Aplastic Anemia & MDS International Foundation (AA-MDSIF)
http://www.aamds.org/aplastic
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 website provides educational materials and medical information about AA, MDS, and PNH.
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National Institutes of Health (NIH)
http://www.nih.gov
On this site, you can search a collection of clinical studies being conducted by the NIH.
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National Organization for Rare Disorders (NORD)
http://www.rarediseases.org
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.
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PNH Research and Support Foundation
http://www.pnhfoundation.org
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.
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PNH Support Group
http://www.pnhdisease.org
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.
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ClinicalTrials.gov
http://www.clinicaltrials.gov
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.
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Harvard Health Publications
http://www.health.harvard.edu
Affiliated with the Harvard Medical School, Harvard Health Publications provides an online resource for current health and medical information. Here you’ll find up-to-date insight on today’s health and medical topics, including women’s health information, men’s health information, wellness and prevention, and emotional well-being and mental health.
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Mayo Clinic
http://www.mayoclinic.com
The world’s first and largest integrated, not-for-profit group medical practice offers medical and health information and tools for healthy living. The website reflects the expertise of Mayo’s 2,500 physicians and scientists.
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WebMD
http://www.webmd.com
WebMD is a source for health and medical news and information. WebMD provides information, community, and educational services by blending expertise in content, community services, expert commentary, and medical review.
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