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Welcome!

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.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

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
Giving thanks: Why gratitude lifts us up when we're feeling down
When you're down, science says gratitude may be exactly what you need to lift you back up.
Hospital system fires 50 over flu shots. Here's why
A Midwest health system fired 50 people who refused to get flu shots. Doctors say mandatory vaccination against influenza protects patients.
Parasite kills hundreds of Vietnam vets
Hundreds of veterans have been infected by a slow-killing parasite while fighting in Southeast Asia.
A 60-second breathing exercise to keep you sane
Diffuse family stress and calm down in one minute flat.
When things go wrong: How losing my marriage made me more thankful
A broken heart can be a powerful gift.
Politics is ruining Thanksgiving. Here's how to avoid it.
If the first Thanksgiving after the election was tense, experts say this year's holiday will be even worse. Here's how to navigate your family's gathering.
Why science says you should take more rest days
Without recovering properly, you could stall your progress ? or worse, reverse it.
The leading causes of cancer have changed
Smoking and obesity are the leading causes of cancer in the U.S., a new American Cancer Society analysis finds. Drinking is also a major cause.
New blood pressure guidelines: Is yours high now?
New hypertension guidelines mean high blood pressure starts at a reading of 130/80, lower than previous guidelines.
'Skinny' health plans confuse consumers
Limited benefit health plans, aka skinny plans, may be cheap but they don't cover much, are not real health insurance and they're confusing consumers.
Channel: Medscape Hematology-Oncology Headlines
Second Cancers Common in Survivors, Especially Older AdultsSecond Cancers Common in Survivors, Especially Older Adults
Second cancers affect about 25% of survivors 65 years and older, but patients with cancer who have had a prior malignancy are regularly excluded from clinical trials.
Medscape Medical News
Neratinib: Extended Adjuvant Therapy, But When to Prescribe?Neratinib: Extended Adjuvant Therapy, But When to Prescribe?
The ExteNET study led to the approval of neratinib for extended adjuvant treatment of early-stage HER2+ breast cancer. But when should it be prescribed?
Medscape Medical News
HPV Testing Alone: Ready for Cervical Cancer Screening?HPV Testing Alone: Ready for Cervical Cancer Screening?
Cotesting with both Pap smear and HPV testing is unlikely to detect cancer cases that wouldn't be found using HPV testing alone, say researchers.
Medscape Medical News
Is Lung Cancer Incidence in Never-Smokers Increasing? Is Lung Cancer Incidence in Never-Smokers Increasing?
Australian researchers report finding that lung cancer rates among never-smokers are stable, after US researchers raised the alarm over an apparent doubling in incidence.
Medscape Medical News
In US, 4 out of 10 Cancers Could Be PreventedIn US, 4 out of 10 Cancers Could Be Prevented
Potentially modifiable risk factors account for a large proportion of all cancer cases and cancer-related deaths in men and women living in the US.
Medscape Medical News
Prostate Cancer Care Is 'Changing Rapidly': ESMO 2017Prostate Cancer Care Is 'Changing Rapidly': ESMO 2017
Exciting research presented at ESMO 2017 will likely affect clinical practice in metastatic prostate cancer, says Dr Johann de Bono.
Medscape Oncology
A Bill to 'Eliminate Prostate Cancer Misdiagnosis'A Bill to 'Eliminate Prostate Cancer Misdiagnosis'
Who wouldn't want to eliminate the problem of men being wrongly told they had prostate cancer?
Medscape Medical News
Optimizing Treatment for Castration-Resistant Prostate CancerOptimizing Treatment for Castration-Resistant Prostate Cancer
Individualizing castration-resistant prostate cancer therapy depends not only on drug profiles but also on patient-related factors. Experts offer a way through the data to reach a clinical decision.
Medscape Oncology
FDA OKs First Adjuvant Treatment for Kidney Cancer FDA OKs First Adjuvant Treatment for Kidney Cancer
Sunitinib is now approved for use after surgery in renal cell carcinoma patients who are at high risk for disease recurrence.
FDA Approvals
FDA Clears First-in-Class Emicizumab for Hemophilia AFDA Clears First-in-Class Emicizumab for Hemophilia A
Hemlibra is a first-in-class bispecific monoclonal antibody that bridges activated factor IX and X to replace the missing factor VIII.
FDA Approvals

 

 
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