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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
vCJD test could enable blood supply screening
A new blood test has been found to detect variant Creutzfeldt-Jakob disease with high accuracy, an international research team has reported.
Fanconi anaemia linked to major cancer gene
A molecular link between a rare childhood genetic disease and a major cancer gene has been found that could result in improved treatment for some patients, according to US researchers.
Genomic analysis of AML subtype is revealed
The first comprehensive genomic analysis of a rare subtytpe of acute myeloid leukemia has been unveiled at the annual meeting of the American Society of Hematology in San Diego, USA.
Fasting may limit leukaemia
Intermittent fasting could be effective at stalling the progress of B-cell and T-cell acute lymphoblastic leukaemia in children, researchers have found.
Hope for pre-eclampsia therapy
Treating white blood cells with hormones may prove an effective therapy for pre-eclampsia, according to laboratory research unveiled by British researchers.
Dormant cells may explain leukaemia relapse
German researchers say they have found a rare population of dormant leukaemia cells, which may help explain disease relapse.
UK study to trial emergency blood products
A major British study is to test the benefits of giving blood products to seriously injured patients before they are taken to hospital, it has been announced.
Diabetes link to lymphoma-related heart failure
Patients with diabetes treated for cancer may face an increased risk of developing heart failure, a European conference has heard.
Ribosome role in multiple myeloma
Ribosome defects might play a key role in the development of multiple myeloma in a significant proportion of patients with the disease, according to Belgian scientists.
TKI reduction is 'safe' for some leukemia patients, studies show
Some chronic myelogenous leukemia (CML) patients can safely reduce their intake of a treatment drug to lessen the side effects, British researchers have told a major conference.
Channel: NBC News Health
Trump targets Planned Parenthood with new abortion rule
Groups like Planned Parenthood will be forced to choose between federal funding and offering abortion under the same roof as other services.
How to talk to your kids about school shootings
How to help your kids feel safe when their world feels out of control.
Pee in the pool? That's not all
Hotel pools and spas cause a third of pool-linked disease outbreaks
Latest Ebola outbreak just spread to a large city
Vaccines have arrived for a first round of immunization but a case in a city is a "game changer"
Bill Gates reveals Trump's confusion between HIV and HPV
The billionaire Microsoft founder also said it was "kind of scary how much he knew about my daughter's appearance."
New drug may prevent migraines
When other medications have failed, new injection treatment may help some patients with disabling headaches.
The best exercise to tone each one of your trouble spots
Target your abs, glutes and arms ? or combine all five movements for a total-body tone up.
FDA shames firms fighting generic competitors
List is meant to aid "transparency", FDA says
Opioid crisis makes more organs available
Organs from overdose victims are safe, studies show
More teens attempt suicide. It's not clear why.
Rates go up during the school year, plummet during summer. Experts wonder about social media's role.
Channel: Medscape Hematology-Oncology Headlines
'Best Survival Data Ever' in Young T-Cell Leukemia Patients 'Best Survival Data Ever' in Young T-Cell Leukemia Patients
Moving nelarabine to the front line and combining it with methotrexate improved 4-year disease-free survival in young patients with T-cell acute lymphoblastic leukemia.
Medscape Medical News
Lung Cancer Screening Rates Only 2% Across USLung Cancer Screening Rates Only 2% Across US
A new analysis, which finds that the lung cancer screening rate among eligible current and former smokers is only 1.9% across the US, should serve as a call to action, say researchers.
Medscape Medical News
Trastuzumab for 6 Months Instead of 1 Year? Trastuzumab for 6 Months Instead of 1 Year?
The standard of care for HER2-positive breast cancer is trastuzumab (Herceptin) for a year; but could half that be enough?
Medscape Medical News
FDA OKs Platelet Booster for Liver Disease PatientsFDA OKs Platelet Booster for Liver Disease Patients
Avatrombopag increases platelet counts and may decrease or eliminate the need for transfusions in patients with liver disease and thrombocytopenia who are to undergo a planned medical or dental procedure.
News Alerts
French Twist: ADT for Prostate Cancer on Active SurveillanceFrench Twist: ADT for Prostate Cancer on Active Surveillance
Administering androgen deprivation therapy (ADT) to men with low-risk prostate cancer improves some short-term outcomes. But is it still active surveillance? And do otherwise healthy men need treatment?
Medscape Medical News
What's Hot (and Overheated?) at ASCO 2018 What's Hot (and Overheated?) at ASCO 2018
The largest cancer meeting in the world is coming up soon, but early release of abstracts means that data to be presented are already making news.
Medscape Medical News
New Data: Finasteride Safely Prevents Prostate CancerNew Data: Finasteride Safely Prevents Prostate Cancer
The thumbnail take on finasteride has been that it prevents prostate cancer but increases the risk for high-grade disease. A new study debunks the latter idea.
Medscape Medical News
'Notable Differences' With 3 Prostate Cancer Genomics Tests'Notable Differences' With 3 Prostate Cancer Genomics Tests
In a novel study, the three leading prostate cancer genomics tests, which are used to help stratify favorable-risk cancers and to aid decision-making about active surveillance, were compared.
Medscape Medical News
Cabozantinib Looks Promising for Malignant PheochromocytomaCabozantinib Looks Promising for Malignant Pheochromocytoma
Tyrosine kinase inhibitor may offer several benefits to patients with malignant pheochromocytomas and paragangliomas, very rare forms of cancer that are difficult to treat.
Medscape Medical News
Richter's Esmya Drug May Have Contributed to Liver Damage Cases-EMARichter's Esmya Drug May Have Contributed to Liver Damage Cases-EMA
Hungarian drugmaker Richter's drug Esmya (ulipristal acetate) used to treat benign tumors of the womb may have contributed to some cases of serious liver damage, European health regulators said on Friday after a months-long review.
Reuters Health Information


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