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PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518).
https://rarediseases.org/organizations/pnh-support-group/
The PNH Support Group is an Internet-based support group for patients and families affected by paroxysmal nocturnal hemoglobinuria (PNH), a rare, acquired (non-genetically transmitted), chronic disorder characterized by a decreased number of red blood cells (anemia) and the presence of blood in the urine (hemoglobinuria) and plasma (hemoglobinemia), which is evident after sleeping.
Welcome to the website for the PNH (Paroxysmal Nocturnal Hemoglobinuria) support group. Although there is an abundance of resources on this site, our aim is not to inundate the reader with medical information, but to provide support and to share the personal experiences of the members who are afflicted with, or care about someone with this condition.
Support at last The road to a PNH diagnosis can be a long and sometimes emotional one. The good news is that you can easily find the information, resources, and support to help you move forward.
https://www.ultomiris.com/pnh/support
OneSource: available at no cost to people living with PNH, you can get one-on-one support from an Alexion Case Manager. OneSource can help you learn about PNH, co-verify your insurance coverage, and identify helpful resources for people living with PNH and those who care for them.
https://www.facebook.com/PNH-Support-126655011000361/
PNH Support. 329 likes · 5 talking about this. We are PNH patients in England, Wales & NI. We are a registered charity (1161518). Patient/family member? Join our closed group.Followers: 344
https://www.pnhinterestgroup.org/about/patient-professional-organizations/pnh-patient-organizations/
PNH Support A registered charitable membership organisation of PNH patients and family members living in England, Wales, and Northern Ireland that provides peer-to-peer support, information, and advocacy on behalf of its members
https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/labmed/paroxysmal-nocturnal-hemoglobinuria-pnh/
At a Glance PNH is a rare, acquired stem cell disorder that results in episodic intravascular hemolysis, hemoglobinuria, hemolysis, and venous thrombosis. A somatic mutation causes loss of cell ...Author: Elizabeth Wagar
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2710914/
Jun 25, 2009 · Abstract Paroxysmal nocturnal hemoglobinuria (PNH) is a rare clonal blood disorder that manifests with hemolytic anemia, bone marrow failure, and thrombosis. Many of the clinical manifestations of the disease result from complement-mediated intravascular hemolysis. Allogeneic bone marrow transplantation is the only curative therapy for PNH.Cited by: 230
https://www.webmd.com/a-to-z-guides/paroxysmal-nocturnal-hemoglobinuria-pnh
WebMD's guide to the symptoms, causes, and treatment of paroxysmal nocturnal hemoglobinuria, a rare blood disease. Skip to main content. ... such as a PNH support group that meets locally or online.Author: Camille Peri
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