The following resources may help patients and their loved ones better understand and cope with a diagnosis of PNH. Sign up for the PNH newsletter to keep informed of the latest news in PNH and get notified of any updates to the site.
Links
We have compiled a useful list of pertinent websites, including online resources for support groups, clinical trials, and general health information. See below to view online resources for health care professionals and PNH patients.
Published literature
We have collected numerous published articles that health care professionals and PNH patients may find of interest. While these articles are intended for physicians, patients may find some of the information to be helpful. We recommend patients note the publication, author, and publication date of specific literature and further discuss the findings with a physician. See below to view published literature regarding PNH.
Materials
See below for materials, such as a video about the impact of PNH, or download a brochure on recognizing and diagnosing PNH.
Alexion Pharmaceuticals
Alexion Pharmaceuticals is a biotechnology company working to develop and deliver drug therapies for patients with serious and life-threatening medical conditions. Alexion is dedicated to research and development of treatment for patients with PNH. Alexion is also the sponsor of PNHsource.com and the PNH Patient Registry. For information about Alexion-sponsored clinical trials and important milestones in the area of PNH, please click here.
Alexion Pharmaceuticals
Alexion Pharmaceuticals is a biotechnology company working to develop and deliver life-changing drug therapies for patients with serious and life-threatening medical conditions. Alexion is engaged in the discovery and development of therapeutic products aimed at treating patients with a wide array of severe disease states, including PNH and other hematologic diseases, cancer, and autoimmune disorders. You can learn more at Alexion’s website.
Aplastic Anemia & MDS International Foundation (AA-MDSIF)
AA-MDSIF is a non-profit 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.
Aplastic Anemia & MDS International Foundation (AA-MDSIF)
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.
ClinicalTrials.gov
Review regularly updated information about federally and privately supported clinical research in human volunteers. Research information about a trial’s purpose, who may participate, locations, and contact information.
Harvard Medical School
Affiliated with the Harvard Medical School, Harvard Health Publications provides a trusted 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.
Mayo Clinic
The world’s first and largest integrated, not-for-profit group medical practice offers award-winning medical and health information and tools for healthy living. The website reflects the expertise of Mayo’s 2,500 physicians and scientists.
National Institutes of Health
Search a collection of clinical studies being conducted by the National Institutes of Health (NIH).
National Institutes of Health
Or visit the official website of the NIH, an agency of the US Department of Health and Human Services, and one of the world’s foremost medical research centers.
National Organization for Rare Diseases (NORD)
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.
National Organization for Rare Diseases (NORD)
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. The NORD website provides valuable information in all of these areas.
PNH Research and Support Foundation
An organization dedicated to raising funds for PNH research and helping families with disease-related expenses not covered by insurance.
PNH Support Group
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.
Published Literature Regarding PNH
The following are published articles of interest; clicking on them will link you to an article or abstract on either PubMed or one of its affiliates. PubMed is a service of the US National Library of Medicine that includes over 16 million citations from MEDLINE and other life science journals for medical articles dating back to the 1950s. Literature includes review articles, clinical trial reports, case studies, and more, from peer-reviewed medical journals.
Parker C, Omine M, Richards S, et al. Diagnosis and management of paroxysmal nocturnal hemoglobinuria. Blood. 2005;106:3699-3708.
Rosse WF, Hillmen P, Schreiber AD. Immune-mediated hemolytic anemia. Hematology (Am Soc Hematol Educ Program). January 2004:48-62.
Moyo VM, Mukhina GL, Garrett ES, Brodsky RA. Natural history of paroxysmal nocturnal haemoglobinuria using modern diagnostic assays. Br J Haematol. 2004;126:133-138.
Johnson RJ, Hillmen P. Paroxysmal nocturnal haemoglobinuria: nature’s gene therapy? J Clin Pathol. 2002;55:145-152.
Socie G. Paroxysmal nocturnal haemoglobinuria: long-term follow up and prognostic factors. Lancet. 1996;348:573-577.
Hillmen P, Lewis SM, Bessler M, Luzzatto L, Dacie JV. Natural history of paroxysmal nocturnal hemoglobinuria. N Engl J Med. 1995;333:1253-1258.
The PNH Research and Support Foundation
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.
WebMD
An excellent source for trustworthy and timely health and medical news and information. WebMD provides credible health information, a supportive community, and educational services by blending award-winning expertise in content, community services, expert commentary, and medical review.
PNH Basic Explanations
Sponsored by the Aplastic Anemia and MDS International Foundation (AA-MDSIF), this brochure provides basic information about bone marrow diseases. Please click on the link below to order the “Basic Explanations about PNH” Brochure:
Recognizing and Diagnosing PNH
This brochure focuses on the signs and symptoms of PNH and how it is diagnosed by clinicians. Please click here to order the “Recognizing and Diagnosing PNH” Brochure.
Diagnosing PNH
PNH has been called “the great masquerader”, because its symptoms can be disguised as more common disorders. Leading hematologists give insights into diagnosing this rare disease.
Diagnosing PNH
PNH has been called “the great masquerader,” because its symptoms can be disguised as more common disorders. Leading hematologists give insights into diagnosing this rare disease.
The Emotional and Physical Impact of PNH
Patients and hematologists comment on the emotional and physical impact of PNH, their concerns related to living with or treating PNH, and how the disease can affect quality of life.
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