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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
Researchers take step to a better flu vaccine
Researchers made a mutant influenza virus, then used it to make a better flu vaccine
Vaccine rates are up, but so are refusals
More U.S. kids are getting their full series of vaccines, but more and more parents are also refusing vaccinations, new health insurance data show.
How one man lost 50 pounds with 5:2 intermittent fasting
He eats normally five days a week and fasts for two.
Core exercises that are better for your back (and body) than crunches
These exercises protect your back and neck, and target more of your abdominal muscles than crunches alone.
How three first-generation immigrants are using machine learning to improve mental health care
The founders of Spring Health are using artificial intelligence and clinical data to help improve mental health care.
Could you pass the mental test Trump took?
Trump took the Montreal Cognitive Assessment (MoCA), designed as a screening tool for the loss of clear thinking that sometimes precedes dementia.
Counting time, not calories can lead to weight loss
Time-restricted feeding, or TRF, is an increasingly studied diet that researchers believe may be a tool for weight-loss, diabetes prevention and even longevity.
Maternal health statistics staggering for black women
About 50,000 women suffer complications during pregnancy and black women are three to four times more likely to die than white women during pregnancy.
Genius hacks that make convenience foods healthier
Add freshness and flavor ? and an extra dose of nutrition ? to your favorite pantry staples.
Trump is overweight, but who isn't?
President Donald Trump is a normal healthy 71-year-old, overweight but not obese, his doctor says.
Channel: Medscape Hematology-Oncology Headlines
CancerSEEK: Blood Test That Detects Eight Common CancersCancerSEEK: Blood Test That Detects Eight Common Cancers
This blood test combines an analysis of DNA and levels of cancer protein biomarkers and can detect eight different cancers. But it is not ready yet for clinical use.
Medscape Medical News
With So Many Options, Best CLL Treatment May Be a Clinical TrialWith So Many Options, Best CLL Treatment May Be a Clinical Trial
Combination regimens in CLL are already impressive, but new combinations currently being evaluated have strong potential to be even better.
Medscape Oncology
Proton Therapy Not Better Than IMRT in Lung Cancer Proton Therapy Not Better Than IMRT in Lung Cancer
In a randomized trial comparing the two modalities, proton therapy was not superior in reducing the rate of serious lung toxicity
Medscape Medical News
Venetoclax for Older Patients With AML? 'Remarkable' Response Venetoclax for Older Patients With AML? 'Remarkable' Response
Older patients with AML, who are not eligible for intensive induction chemotherapy, can hope that combinations with venetoclax may eventually be viable options.
Medscape Medical News
Heated Intraperitoneal Chemo for Ovarian Cancer Ups SurvivalHeated Intraperitoneal Chemo for Ovarian Cancer Ups Survival
A single administration of hyperthermic intraperitoneal chemotherapy at the end of cytoreductive surgery improves overall survival in women with advanced ovarian cancer.
Medscape Medical News
'Cultural Change' in DCIS 'Cultural Change' in DCIS
Some think it's time to change how we talk about DCIS and to consider de-escalation of therapy. Drs Kathy Miller and Shelley Hwang discuss these hot topics and the COMET study at SABCS 2017.
Medscape Oncology
Late Recurrence in ER- Positive Breast Cancer: Banking on BiomarkersLate Recurrence in ER- Positive Breast Cancer: Banking on Biomarkers
Evaluation of biomarkers after 5 years of standard therapy for hormone-positive breast cancer may help determine those at risk for recurrence and those who may need further endocrine therapy.
Medscape Oncology
Parenteral Fluids in Cancer Patients at End of LifeParenteral Fluids in Cancer Patients at End of Life
Clinically assisted hydration could modestly extend life in terminally ill cancer patients, providing an extra day of survival, but it needs further study.
Medscape Medical News
FDA Warning on Anaphylaxis With Rolapitant for CINV FDA Warning on Anaphylaxis With Rolapitant for CINV
The drug is used to prevent and reduce chemotherapy-induced nausea and vomiting (CINV) in patients with cancer; anaphylactic reactions have been seen in the postmarketing setting.
News Alerts
'Eye-opening' Study on Rates of Thrombosis With MPNs'Eye-opening' Study on Rates of Thrombosis With MPNs
For the first time, a population-based study has assessed the rates of thrombotic events in patients with myeloproliferative neoplasms (MPNs).
Medscape Medical News


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