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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 Makes Second Major Concession on Government Funding
The White House said Wednesday that it would continue to pay for a subsidy for low-income people in the Affordable Care Act.
GOP Health Care Gets Big Boost With Freedom Caucus Backing
The once-sidelined Republican health care bill got a big boost Wednesday when the conservative Freedom Caucus gave its backing to new revisions.
Artificial Womb Is a Kinder, Gentler Incubator
Researchers are creating a watery, artificial womb called Biobag to improve care for extremely premature babies.
Hidden Breeding Grounds for Bacteria in Your Home Revealed
Armed with test swabs and a bacteria meter, TODAY's Jeff Rossen ferrets out hidden breeding grounds for germs ? in his own home!
'Don't Run. Get Inside': Public Should Know How to Cope in Nuke Attack, Experts Say
Cities mostly don't have plans, but experts say that Americans can be ready for an unthinkable nuclear attack if they know to "shelter in place."
Dogs Get Their Very Own Family Tree
First came working dogs ? breeds that could guard or herd livestock. Later came the hunting dogs. Last came the cute, fluffy things.
You Thought It Was An Urgent Care Center, Until You Got the Bill
Patients are confusing free-standing emergency rooms with urgent care centers, and paying a price.
DOJ Asks for More Time to Mull Religious Exemption to Contraception Coverage
Is the Trump administration reneging on Donald Trump's campaign promise to exempt religious organizations from having to provide birth control?
Beware of 'Natural' Cancer Cures That Could Harm, FDA Warns
The FDA is warning 14 companies to stop making bogus cancer cure claims and is warning consumers not to buy into the quackery.
Desperate Families Driven to Black Market Insulin
Without insulin Gabriella dies. She's allergic to the one her insurer covers, and can't afford the one she needs. So her mom made a desperate choice.
Channel: Medscape Hematology-Oncology Headlines
Troubles of the Billionaire 'Moonshot' Doctor Troubles of the Billionaire 'Moonshot' Doctor
Only months after being in the spotlight as a potential player in the Trump administration, a wealthy doctor is beset by a rash of controversies
Medscape Medical News
ASCO Issues Guideline on Castrate-Resistant Prostate CancerASCO Issues Guideline on Castrate-Resistant Prostate Cancer
The new document, a provisional clinical opinion, offers guidelines for treating chemotherapy-naive men who develop castrate-resistant prostate cancer.
Medscape Medical News
FDA Takes Action Against 'Bogus Cancer Cures'FDA Takes Action Against 'Bogus Cancer Cures'
The FDA has sent warning letters to 14 companies that are 'peddling bogus cancer cures' and are exploiting the cancer patients' desperation.
Medscape Medical News
Many Men Have No Discussion of Pros and Cons Before PSA Test Many Men Have No Discussion of Pros and Cons Before PSA Test
A national survey shows that less than one third of men are discussing the pros and cons of prostate-specific antigen testing with their healthcare provider before undergoing screening.
Medscape Medical News
Biosimilar Rutiximabs, and Inotuzumab, Coming to EuropeBiosimilar Rutiximabs, and Inotuzumab, Coming to Europe
Two biosimilar rituximab products have been recommended for approval in Europe, as has inotuzumab ozogamicin for acute lymphoblastic leukemia.
International Approvals
Lack of Understanding of Genetic Breast Cancer TestingLack of Understanding of Genetic Breast Cancer Testing
A lack of understanding among clinicians about genetic information is contributing toward unnecessary bilateral mastectomies.
Medscape Medical News
Possibility of 'Cure' for Metastatic Prostate Cancer Possibility of 'Cure' for Metastatic Prostate Cancer
A small study in 20 men with early-stage extrapelvic and bone metastases shows that aggressive multimodal therapy 'can eliminate detectable disease.'
Medscape Medical News
ASTRO Releases First Guidelines for Oropharyngeal Cancer ASTRO Releases First Guidelines for Oropharyngeal Cancer
ASTRO releases its first guidelines for the management of oropharyngeal cancer but purposefully avoids distinguishing between HPV-positive and -negative disease despite differences in prognosis.
Medscape Medical News
Strategies to Curb Drug Costs Affect Patient Care, Says ASCOStrategies to Curb Drug Costs Affect Patient Care, Says ASCO
Current utilization management policies used by health insurance companies to control drug costs may negatively affect patients with cancer.
Medscape Medical News
Brazil's Phospho Cancer Cure Frenzy: A Cautionary TaleBrazil's Phospho Cancer Cure Frenzy: A Cautionary Tale
Brazil's tale of a 'miracle cancer pill' showcases how a mix of academic carelessness, political opportunism, and mistrust of science can turn into an explosive situation.
Medscape Medical News


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