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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
Despite Trump's Talk, No Official Action Yet on Opioid Crisis
Two weeks after Trump declared a national emergency, he has not sent anything on paper to Congress to get the relief money flowing.
Can Vitamin C Prevent Leukemia?
New studies shed light on the links between vitamins and cancer. Two show vitamin C might prevent leukemia, while high doses of B may worsen lung cancer risk.
6 Tricks a Chef Uses to Make Healthy Food Taste Delicious
Chef Seamus Mullen shares six winning strategies for making healthy food a feast for the senses and your stomach.
7 Simple Swaps to Make for Lasting Weight Loss
A registered dietitian shares her top tips for losing those last five pounds.
When Relatives Steal Dying Patients' Opioids
Hospices struggle with a painful reality: relatives stealing opioid medication issued for end-of-life pain control.
An Old Heart Test May Help Prevent Sudden Cardiac Death
A leading heart doctor discovered a way to use EKG test to predict who's at high risk for a sudden cardiac arrest.
Tom Brady, Chloe Bennet Give 'Team Krissy' Boost, Shine Spotlight on Bone Marrow Registry
Krissy Kobata is scheduled for a bone marrow transplant after 10 years of searching for a donor. Her efforts have added more than 8,000 names to the registry.
How Yoga Keeps Your Brain Healthy
A little downward dog action buffers stress, enhances cognition and keeps your noggin young.
New App Will Connect LGBTQ Patients With Inclusive Doctors
For the founders of the SpectrumScores app ? who are all University of Pennsylvania medical students ? the disparities in LGBTQ health care is personal.
What Your Instagram Photos Say About Your Mental Health
A computer program was able to spot depressed people just by scanning their Instagram photos. Do your pictures fit the profile?
Channel: Medscape Hematology-Oncology Headlines
In Esophageal Cancer, Women Have Stronger ResponsesIn Esophageal Cancer, Women Have Stronger Responses
Chemoradiotherapy followed by surgery is standard of care for locally advanced esophageal cancer, but how the sexes respond to treatment is not uniform.
Medscape Medical News
High Doses of Vitamin B Linked to Lung Cancer Increase High Doses of Vitamin B Linked to Lung Cancer Increase
Long-term use of high doses of vitamin B6 and B12 supplements has been associated with an increased risk for lung cancer in men but not in women.
Medscape Medical News
Cancer Patients Illegally 'Traded as Commodities,' Says SuitCancer Patients Illegally 'Traded as Commodities,' Says Suit
Two large cancer treatment center companies agreed to exclusively refer patients to one another for the purpose of driving out competition in southwest Florida, according to a whistle-blower lawsuit.
Medscape Medical News
Cancer Patients Write to Heal in Unique Writing WorkshopCancer Patients Write to Heal in Unique Writing Workshop
A writing workshop is helping cancer patients and survivors as well as their carers manage the emotional issues and concerns that come with a cancer diagnosis.
Medscape Medical News
Statins Again Shown to Improve Odds After Cancer DiagnosisStatins Again Shown to Improve Odds After Cancer Diagnosis
New data add to previous reports that taking statins after a prostate cancer diagnosis is associated with better cancer-specific and overall survival rates.
Medscape Medical News
Cancer Screening Not Recommended in Patients With VTEsCancer Screening Not Recommended in Patients With VTEs
A more extensive screening approach identifies more cancer cases in patients with VTEs but doesn't necessarily improve outcomes.
Medscape Medical News
Azacitidine Still Standard of Care in High-Risk MDS Azacitidine Still Standard of Care in High-Risk MDS
A phase 2/3 study compared two combination approaches with azacitidine and concluded that azacitidine alone showed similar efficacy to either combo for patients with high-risk MDS. So what's next in MDS management?
Medscape Medical News
Flexible Sigmoidoscopy Reduces All-Cause MortalityFlexible Sigmoidoscopy Reduces All-Cause Mortality
A reanalysis of data reviewed for the USPSTF recommendations for colorectal cancer screening found that all-cause mortality was reduced with flexible sigmoidoscopy.
Medscape Medical News
Study: There Is a Free Lunch (for Prostate Cancer Docs)Study: There Is a Free Lunch (for Prostate Cancer Docs)
Payments by pharmaceutical companies to prostate cancer physicians did not lead to an increase in prescribing of two hormonal therapies, a study found.
Medscape Medical News
Tackling the WHO Classification of CNS TumorsTackling the WHO Classification of CNS Tumors
Revised WHO CNS tumor classifications should be updated in real time, two experts tell Medscape.
Medscape Oncology


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