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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
New Trump teen pregnancy plan troubles advocates
New approach is a 'radical departure' from what's been shown to work, experts say
Prosecutor says MSU dean told pelvic exam model he was 'turned on'
Dr. William Strampel was disgraced doctor Larry Nassar's boss at MSU.
Judge blocks Trump from cutting teen pregnancy prevention program
"The Court finds that HHS arbitrarily and capriciously terminated the program," the judge wrote.
How the Japanese art of Kintsugi can help you deal with tough times
Whether you are going through a job loss or divorce, this practice of fixing broken things may help heal what's broken in you.
NY doctor charged in opioid deaths gets job offer from clinic
He's accused of over-prescribing pain pills for profit, but is still allowed to practice medicine.
How to survive allergy season
Don't fall victim to high-pollen counts. Here's what you can do to ease symptoms ? and even prevent them altogether.
Diet tips to forget and what to do instead
Some advice out there is good, some not so much.
FDA cracks down on Juul sales to kids
Convenience stores warned about selling e-cigarettes to children under 18; eBay also urged to control listings
How one family is educating students, teachers on mental health
After losing their son Jordan to suicide in 2010, the Binion family set out to provide schools and students with resources about mental health.
How to recover from a tough workout
Feeling sore and depleted after a hard workout? Here's what will and won't help you bounce back.
Channel: Medscape Hematology-Oncology Headlines
WTC Disaster Cancer Risks: Not Clear, Despite Best IntentionsWTC Disaster Cancer Risks: Not Clear, Despite Best Intentions
Two new studies point to the possibility that rates for specific cancers may be higher among firefighters who served at the World Trade Center than in the general population. An independent expert says it's not certain.
Medscape Medical News
What's the Total Cost of One CAR T-Cell Treatment?What's the Total Cost of One CAR T-Cell Treatment?
For the first time, a study provides the total cost -- not just the drug cost -- of treatment with a chimeric antigen receptor (CAR) T-cell product.
Medscape Medical News
Training 'Front-line' Staff to Manage CAR T Toxicity Is CriticalTraining 'Front-line' Staff to Manage CAR T Toxicity Is Critical
Experts outline strategies for managing CAR T-cell toxicity outside of clinical trials.
Five Steps to Keep Patients With Cancer Out of EDFive Steps to Keep Patients With Cancer Out of ED
Researchers have identified five strategies that can help patients with cancer avoid emergency department visits and unplanned hospitalizations.
Medscape Medical News
Neoadjuvant Immunotherapy Data Suggest More Lung Cancer CuresNeoadjuvant Immunotherapy Data Suggest More Lung Cancer Cures
Among the new data on immunotherapy for lung cancer presented at the recent AACR meeting, the potential role of immune checkpoint inhibitors in the neoadjuvant setting may be the most promising.
Medscape Oncology
Palliative Care Questions to Ask Every Advanced Cancer PatientPalliative Care Questions to Ask Every Advanced Cancer Patient
Tips on making palliative care discussions a routine part of advanced breast cancer treatment.
Medscape Oncology
Checkpoint Inhibitors Have a Role for 'Virtually Every Patient'Checkpoint Inhibitors Have a Role for 'Virtually Every Patient'
After an 'extraordinary week' of advances in lung cancer, Dr Mark Kris explains why checkpoint inhibitors now play a major role in lung cancer therapy.
Medscape Oncology
Do You Pray With Your Patients?Do You Pray With Your Patients?
Patients sometimes ask for spiritual comfort from their physicians and other clinicians.
Medscape Reader Polls
Low Risk for Ureteral Stricture From Cervical Ca BrachytherapyLow Risk for Ureteral Stricture From Cervical Ca Brachytherapy
Neither intracavitary nor interstitial brachytherapy increases the risk for ureteral stricture in locally advanced cervical cancer, except in the setting of hydronephrosis.
Medscape Medical News
Bundled Payments With Drug Costs Penalize Oncology PracticesBundled Payments With Drug Costs Penalize Oncology Practices
Bundled payments are being tested as a means of cutting costs, but owing to the mix of patient conditions, some oncology practices could see a decline in revenue.
Medscape Medical News


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