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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.

We are not medical specialists, but due to the rarity of the disease, the combined knowledge of our 400+ members is a huge benefit to all who join our group. If you have recently been diagnosed with PNH, or know someone who has, this group is a wonderful source of information.

Our members area has lots of information available and there is no need to register for an account if you don't want to. Feel free to read the Frequently Asked Questions, check out the medical terms in the Glossary, or access medical articles in the Files section. There is also an abundance of Web Links to other sites with information about PNH.


Glossary of
PNH Terms




News Feeds

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Channel: BloodMed.com News
Global success for hemophilia course
A course on managing hemophilia, created at Lund University in Sweden, has attracted health care practitioners from around the world, developers say.
Genetic changes in leukemia type uncovered
The genetic changes that underpin a type of B-precursor acute lymphoblastic leukemia (B-ALL) - the most common children's cancer - have been identified by an international team of researchers.
Genetic insights into CLL cells
Scientists in Sweden say they have found a way to examine different genetic traits in individual leukemia cells.
How cells dodge leukemia treatment
Leukemia cells that survive chemotherapy may evade treatment by fast movement, according to a new study published last night.
Success for blood donor campaign
A British-led campaign to recruit blood donors has achieved significant success, according to its organizers.
New guidelines published for red blood cell storage time
New US guidelines set out good practise for using stored red blood cells.
Role of nearby cells on leukemia risk
A new study reports on the role of abnormal signaling in the bone marrow on the development of leukemia.
Sickle cell survivors examined
Researchers have found that proper management of mildly symptomatic sickle cell disease can have an impact on lifespan.
Warning on immunotherapy side-effects
Studies of new cancer treatments, such as immunotherapies, often fail to report adverse events adequately, a European conference has been told.
Gene editing offers prospects
Gene editing offers huge prospects - but is not yet ready for human testing, according to a new review.
Channel: NBC News Health
FDA Steps Up Warnings for Testosterone
Testosterone and other steroids can not only cause heart attacks, but people can easily abuse them, the FDA says.
What Does A Rise in Obamacare Premiums Mean?
Delighted Republicans celebrated news that Obamacare premiums are going up by more than 20 percent on average. But the price hikes affect only a few.
Parents of Fallen Athletes Push to End Cardiac Deaths
Their goal is a defibrillator on every athletic field.
Guns on Campuses Won't Make Them Safer: Study
A new report by researchers at Johns Hopkins University argues that the data behind the campus-carry movement is flawed.
Pregnant Miami Mom Had Zika. Now She Waits
Zika rarely makes adults seriously ill, but it can get into the brains and bodies of developing fetuses and cause catastrophic damage.
Nurse Who Caught Ebola Settles With Hospital
Nina Pham, one of two nurses who caught Ebola while treating a patient at a Dallas hospital, has settled her lawsuit against the hospital.
Babies Should Sleep in Parents' Room: Guidelines
New guidelines say babies should sleep in their parents' room -- but not in their bed -- to lower the risk of sudden death, or SIDS.
Report: Lesbian, Gay and Bi Adults Have Higher Drug Abuse Rates
Lesbian, gay and bisexual adults are more likely than their straight counterparts to abuse substances and experience mental illness, according to a new report.
Southerners More Likely to Die From Smoking
Cancer caused by smoking is more likely to kill Southerners, a new study finds.
Wrong Antibiotic Prescribed Half the Time
People with sore throats, ear infections and sinus infections get the wrong antibiotic at least half the time, researchers reported Monday.
Channel: Medscape Hematology-Oncology Headlines
Old vs New: End of Debate on Blood Transfusion StorageOld vs New: End of Debate on Blood Transfusion Storage
Storage duration makes no difference in in-hospital mortality rates between groups who receive the freshest vs the oldest blood.
Medscape Medical News
US Surgeons Snipe at UK's DCIS Trial, Who, in Turn, Cry FoulUS Surgeons Snipe at UK's DCIS Trial, Who, in Turn, Cry Foul
A phase 3 clinical trial of active surveillance vs surgery is off and running in the United Kingdom, but some US surgeons have sharp criticisms. Are they fair or unfair?
Medscape Medical News
Pembrolizumab Approved in US for First Line in NSCLC Pembrolizumab Approved in US for First Line in NSCLC
After causing a sensation at the recent ESMO meeting, the new data showing superiority over chemotherapy in the first line have now secured an approval.
FDA Approvals
Cancer Risk Reduction in the Trenches: PCPs RespondCancer Risk Reduction in the Trenches: PCPs Respond
Primary care practitioners (PCPs) say what they are doing to reduce the risk for cancer in their patients -- and also among themselves -- in a new survey.
Medscape Medical News
GSK?s HPV Vaccine, Cervarix, No Longer Available in USGSK?s HPV Vaccine, Cervarix, No Longer Available in US
Sales were low, so GlaxoSmithKline has ceded the human papillomavirus vaccine market to Merck and Gardasil.
Medscape Medical News
Southern Discomfort: Top for Smoking-Related Cancer Deaths Southern Discomfort: Top for Smoking-Related Cancer Deaths
State-specific analysis of cancer mortality due to cigarette smoking showed the proportion of deaths was highest in the South, where tobacco control policies are weak.
Medscape Medical News
Why Cancer Patients Don't Take Their MedicationsWhy Cancer Patients Don't Take Their Medications
Despite the consequences, a surprisingly high proportion of cancer patients don't take their medications as prescribed, according to studies.
Medscape Oncology
Does Immunotherapy Measure Up to the Hype?Does Immunotherapy Measure Up to the Hype?
Dr James Allison, recognized as a pioneer in the field of immunotherapy, takes a look at the realities of current immunotherapy and shares predictions of its future in cancer care.
Medscape Oncology
'More Is Not Necessarily Better': Discontinuing Immunotherapy'More Is Not Necessarily Better': Discontinuing Immunotherapy
Are we harming patients by continuing immune checkpoint inhibitors in lung cancer for too long?
Medscape Oncology
Essential Updates: HER2+ Metastatic Breast CancerEssential Updates: HER2+ Metastatic Breast Cancer
Current best practices and most promising new agents for patients with HER2-positive metastatic breast cancer are reported by a panel of experts at ESMO 2016.
Medscape Oncology


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