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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
Stem Cells Aren't Magic Cure for Impotence
Danish researchers trying to find a way to help men injured by prostate cancer surgery say they got mixed results by injecting them with stem cells.
Why Holly Robinson Peete Believes Autistic Lives Matter Too
Peete hosted a town hall discussion, bringing together law enforcement and the special-needs community for a heartfelt and provocative discussion.
Health Care Bill Hangs in Balance as Trump's Deadline Looms
After a difficult day for Republicans hoping to pass their health care bill, the House is back at it Friday ? with a directive that it's now or never.
What Are the 'Essential Benefits' on the AHCA Chopping Block?
House GOP leaders are now talking about dropping "essential health benefits" from their health care bill. What are these benefits, anyway?
Chuck Todd: Trump Health Care Push Was 'Rookie Error'
President Trump isn't as committed to repealing and replacing Obamacare as Republicans have been, and adds that Trump making his first big piece of legislation a move to take something away was a "rookie error."
Trump Ultimatum: Vote on Health Care Friday or Obamacare Stays
After House Republican leaders abruptly canceled a planned vote on the GOP health care bill Thursday afternoon, Office of Management and Budget director Mick Mulvaney made clear Thursday evening that President Trump is done negotiating on the hotly-debated health care bill and wants a vote on Friday. If the president doesn't get a vote to repeal and replace Obamacare, he will move on to other priorities, Mulvaney said, according to a source in the room during tense talks with GOP members. Tune in to MSNBC for continuing coverage.
Cancer Is Mostly Random, Study Confirms
Random mutations are the single biggest factor in causing cancer, researchers reaffirmed Thursday.
Misty Copeland: A Day With the Ballerina on Her Book Tour
We shadowed Misty on the second stop of her book tour for "Ballerina Body: Dancing & Eating Your Way to a Leaner, Stronger, & More Graceful You."
GOP Health Care Bill in Peril on Eve of House Vote
Freedom Caucus Chairman Mark Meadows said there are enough Freedom members to kill the GOP health care bill unless changes are made.
Retirement Dreams Fizzle for Some Obamacare Clients
Workers dreaming of early retirement are worried as Congress debates replacing the ACA with a law that could cost older Americans a lot more.
Channel: Medscape Hematology-Oncology Headlines
Dinutuximab for Neuroblastoma and Other EU Decisions Dinutuximab for Neuroblastoma and Other EU Decisions
The Europeans have recommended approval of dinutuximab beta for the treatment of high-risk neuroblastoma, as well as fluciclovine (18F) for use in PET imaging of prostate cancer.
International Approvals
CHMP Backs Orphan Drug Refixia for Hemophilia BCHMP Backs Orphan Drug Refixia for Hemophilia B
Refixia (nonacog beta pegol) is a recombinant coagulation factor IX product for the treatment and prophylaxis of bleeding in patients aged 12 years and older with hemophilia B.
International Approvals
Parking Lot Lung Cancer Screening Pays DividendsParking Lot Lung Cancer Screening Pays Dividends
A pilot project of CT-based lung cancer screening, based in a supermarket parking lot, showed that rates of early lung cancer detection were raised fourfold.
Medscape Medical News
Smaller Babies for Women With, and After, Cancer Smaller Babies for Women With, and After, Cancer
Women who have cancer as adolescents or young adults have an increased risk for preterm birth and low birthweight, and the risk is greatest when care is diagnosed during pregnancy.
Medscape Medical News
NCCN Updates Lung Cancer Guideline, AgainNCCN Updates Lung Cancer Guideline, Again
Change and more change is happening in lung cancer, and the National Comprehensive Cancer Network (NCCN) is keeping pace in its guidelines.
Medscape Medical News
Cancer Mutations Mostly Due to 'Bad Luck' -- New DataCancer Mutations Mostly Due to 'Bad Luck' -- New Data
A new article reiterates findings from 2 years ago that cancer mutations are indeed mostly the result of 'bad luck.'
Medscape Medical News
SBRT Viable Option for Elderly Patients With Lung CancerSBRT Viable Option for Elderly Patients With Lung Cancer
In patients older than 80 years, stereotactic body radiation therapy (SBRT) improved survival outcomes without serious toxicity.
Avelumab: First Drug Ever Approved for Merkel Cell Carcinoma Avelumab: First Drug Ever Approved for Merkel Cell Carcinoma
Patients who develop this rare but aggressive skin cancer have not had a specific therapy, until today's approval of a novel immunotherapy.
FDA Approvals
National Comprehensive Cancer Network (NCCN) 22nd Annual ConferenceNational Comprehensive Cancer Network (NCCN) 22nd Annual Conference
Read clinically focused news coverage of key developments from NCCN 2017.
Medscape Oncology
Rucaparib 'Very Active' for High-Grade Ovarian CancerRucaparib 'Very Active' for High-Grade Ovarian Cancer
Dr Maurie Markman reports on high response rates to rucaparib therapy for ovarian cancer and looks forward to future research efforts using this PARP inhibitor.
Medscape Oncology


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