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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
See the States That Trump's Budget Will Hit the Hardest
Trump's budget will overhaul many of the country's social safety-net programs ? ones more commonly used in Republican-leaning states.
From 10 to 375 Cases in Two Weeks: Students Get 'F' for Flu Shots
It started with 10 students ? but within two weeks at The College at Brockport, 375 had the flu, the biggest outbreak in decades.
Transgender Woman Defends Man Who Botched 'Back-Alley Surgery'
A transgender woman who had her testicles removed without a doctor said she had tried to get surgery "through legitimate routes" without success.
Botulism Confirmed in Nacho Cheese Outbreak
California officials said botulism killed one man and sickened nine others who ate nacho cheese from a service station.
Conservative Reps Urge Trump to Fire NIH Head
A group of conservative members of Congress urged President Trump to fire NIH director Francis Collins because of his support for stem cell research.
Forty More Genes for Intelligence Discovered
More genes for intelligence have been found, but don't expect designer smart babies or DNA tests for big brains.
Babies Don't Need Juice, Pediatricians Say
Babies do not need fruit juice and older kids need to watch it, pediatricians said Monday.
US Gender Confirmation Surgery Up 19% in 2016: Doctors
Gender confirmation surgeries rose 19 percent in 2016 from the previous year, a survey of plastic surgeons said.
WHO Spends More on Travel Than on AIDS
The WHO spends more on travel than it does on AIDS or malaria. Is that OK?
U.S. Doctor Dies Near Mount Everest's Summit
It was a deadly weekend on the world's highest mountain.
Channel: Medscape Hematology-Oncology Headlines
Just One Drink a Day Raises Breast Cancer RiskJust One Drink a Day Raises Breast Cancer Risk
In the latest report from the AICR/WCRF, exercise was found to be protective against breast cancer while as little as one alcoholic drink per day raised the risk.
Medscape Medical News
Is General Hospital Plot a Veiled Cancer Drug Ad?Is General Hospital Plot a Veiled Cancer Drug Ad?
When one of the characters in the long-running soap opera developed a rare blood cancer, she was unhappy with the treatment that was proposed.
Medscape Medical News
Prostate Cancer Incidence Drops as Use of PSA Test DeclinesProstate Cancer Incidence Drops as Use of PSA Test Declines
Incidence rates of prostate cancer in the US are dropping, reflecting the declining use of the PSA test, but this leaves a huge amount undetected, warn experts.
Medscape Medical News
Interval Colorectal Cancer Risk Higher in Black PatientsInterval Colorectal Cancer Risk Higher in Black Patients
Many black patients are screened by clinicians with low polyp detection rates, a red flag for poor-quality colonoscopy and missed cancer, the study authors note.
Medscape Medical News
Erectile Dysfunction Drugs Again Cleared of Melanoma RiskErectile Dysfunction Drugs Again Cleared of Melanoma Risk
Another analysis of published data does not support a causal link between erectile dysfunction drugs and increased melanoma risk.
Medscape Medical News
The Hole Story: Ventilated Filters Make Smoking More Deadly The Hole Story: Ventilated Filters Make Smoking More Deadly
Ventilation holes in filters -- now found in nearly every brand of cigarette -- make smoking even more deadly and are associated with a steep rise in lung adenocarcinoma.
Medscape Medical News
Talking With Patients About NGS Testing: Marketing vs RealityTalking With Patients About NGS Testing: Marketing vs Reality
Experts on genomic testing in cancer discuss the marketing of NGS tests, and how they talk to their patients in light of the promise of ?precision medicine.?
Medscape Oncology
First Drug for Cachexia -- Cheers, Then RejectionFirst Drug for Cachexia -- Cheers, Then Rejection
When the clinical trial data were first presented at a European meeting, they were welcomed enthusiastically, but they didn't make the cut for approval.
International Approvals
Could Gefitinib Replace Adjuvant Chemo in NSCLC?Could Gefitinib Replace Adjuvant Chemo in NSCLC?
In patients with EGFR mutations, adjuvant targeted therapy with gefitinib gave better results with less toxicity than adjuvant chemotherapy.
Medscape Medical News
5 Big Qs (and As) on Inherited Prostate Cancer Testing5 Big Qs (and As) on Inherited Prostate Cancer Testing
After a 20-year flow of new data on the subject, there is finally a consensus statement about when to do genetic testing for inherited prostate cancer risk.
Medscape Medical News


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