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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 to Set Up Commission on Opioid Crisis, Sources Say
More than 33,000 people died from opioids, which include prescription painkillers and heroin, in 2015. The CDC calls it an overdose epidemic.
FDA Approves New Eczema Drug
The FDA approved a new, injectable drug on Tuesday to treat serious cases of eczema.
Trump Vows Deal on Health Care, House GOP Says Let's Try
President Donald Trump said Tuesday night that a deal on health care reform wasn't dead ? and vowed it could happen "very quickly."
New Multiple Sclerosis Drug Wins FDA Approval
The FDA approved a new drug to treat multiple sclerosis Tuesday.
Paralyzed Man Moves His Arm Using Brain Implants
A man paralyzed from the shoulders down was able to move enough to eat and drink using a new brain implant system.
Trump Proposes Slashing NIH by $1.2 Billion Immediately
President Trump, who had just proposed slashing the NIH budget for next year by 20 percent, suggested an immediate $1.2 billion cut Tuesday.
Senators Probe Drugmakers' Role in Opioid Epidemic
A Senate committee is investigating whether practices at five top makers of opioids fueled an epidemic of painkiller abuse.
Hospital Stocks Tank as Republicans Try to Resuscitate Health Care Plan
Hospital stocks dropped Tuesday after reports that House Republicans are discussing ways to revive their Obamacare repeal and replacement bill.
Trump Can Make Obamacare Explode. Here's How
How can the Trump administration kill Obamacare? Let us count the ways.
Soccer Player Credits Vegan Diet for Comeback
The Sunderland striker was recalled to the England squad for the first time since 2013 by Gareth Southgate and Defoe looked sharp and in the zone.
Channel: Medscape Hematology-Oncology Headlines
Dramatic Increase in Incidence of Penile Cancer Precursor Dramatic Increase in Incidence of Penile Cancer Precursor
The rates of penile carcinoma in situ, a premalignant precursor of penile cancer, have increased dramatically in recent years in England.
Medscape Medical News
SWISH Four Times a Day to Keep Oral Mucositis Away SWISH Four Times a Day to Keep Oral Mucositis Away
A swish-and-spit steroid mouthwash regimen that dramatically reduces the symptoms of treatment-induced oral mucositis should become a new standrd of care, say experts.
Medscape Medical News
BRCA Testing Has Skyrocketed, but Misses High-Risk WomenBRCA Testing Has Skyrocketed, but Misses High-Risk Women
Although there has been a huge increase in BRCA mutation testing during the past decade, current guidelines and clinical practice do not include many women who are at high risk.
Medscape Medical News
New US Cancer Staging System Debuts in 9 MonthsNew US Cancer Staging System Debuts in 9 Months
The American Joint Committee on Cancer has a new staging system that elevates 'prognostic' status as the official staging classification of every cancer in the United States.
Medscape Medical News
Prostate Cancer 'Undertreated' in 4 of 10 Men in England Prostate Cancer 'Undertreated' in 4 of 10 Men in England
Latest figures from England show that only 60% of men with locally advanced prostate cancer received radical treatment, suggesting that the rest are being undertreated.
Medscape Medical News
Immuno-oncology in Colorectal Cancer: A Sneak PeekImmuno-oncology in Colorectal Cancer: A Sneak Peek
Dr David J. Kerr reviews HDAC and immune checkpoint inhibitors, therapies on the horizon for a subset of patients with colorectal cancers.
Medscape Oncology
Niraparib Approved for Ovarian Cancer Maintenance TxNiraparib Approved for Ovarian Cancer Maintenance Tx
Niraparib Approved for Ovarian Cancer Maintenance Tx Unlike other PARP inhibitors, niraparib was active both in patients with and those without BRCA mutations, and has been welcomed as a 'significant step forward.'
FDA Approvals
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


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