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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
$500B: Opioid crisis far more expensive than previously thought
The White House Council of Economic Advisers pegs the true cost of the crisis in 2015 at $504 billion, a figure that is more than six times the most recent estimate.
How to avoid holiday anxiety
If you're withdrawing or micromanaging, there's a strong chance you're under stress this season.
How traveling alone transformed my self confidence
Stepping outside of your comfort zone can have a huge impact on the person you are when you're back in it.
The weird science behind why we love pumpkin spice
The smell and taste of the fall favorite elicit a strong reaction in our brains and bodies.
Staying with family? Here's how to get a better night's sleep
Hack the pull-out couch with these expert tips.
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.
CTE sent ex-NFL star into disastrous decline
Brain scan technology offers hope deadly CTE can be diagnosed in time to help living NFL veterans, and their families, cope with the diagnosis.
3 simple ways to go on a Facebook diet ? starting today
According to research, the average time spent on Facebook is 55 minutes. How much time are you spending?
7 steps for getting through a panic attack
A blueprint for managing a panic attack as it's happening.
Baby died from marijuana overdose, doctors claim
Two poison control doctors from Colorado claim that a patient they treated, an 11-month-old baby boy, died from an overdose of marijuana.
Channel: Medscape Hematology-Oncology Headlines
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
High-Value Cancer Care Keeps Costs Down? Yes, It's Possible!High-Value Cancer Care Keeps Costs Down? Yes, It's Possible!
A preliminary but innovative study looked directly at oncology practices that deliver high-value care at a low cost and identified some of their attributes.
Medscape Medical News
FDA Clears Wire-Free Breast Tumor Locator for Long-term UseFDA Clears Wire-Free Breast Tumor Locator for Long-term Use
The SAVI Scout surgical guidance system, a nonradioactive wire-free breast tumor localization device, is now cleared for long-term use.
FDA Approvals
Improved Insurance Access Increases Elective Colon Resection RatesImproved Insurance Access Increases Elective Colon Resection Rates
A new analysis proves that the Massachusetts health insurance 'experiment' resulted in better cancer care.
Medscape Oncology
Stage III CRC: Which Patients Need 6 Months of Adjuvant Chemo?Stage III CRC: Which Patients Need 6 Months of Adjuvant Chemo?
At the ESMO 2017 Congress in Madrid, Drs Sobrero and Taieb discuss the optimal duration of adjuvant chemotherapy for stage III colon cancer.
Medscape Oncology
MSK-IMPACT Tumor Profiling Test Authorized by FDA MSK-IMPACT Tumor Profiling Test Authorized by FDA
The MSK-IMPACT tumor profiling test is the first multiplex test to receive FDA authorization. The accreditation of the New York State Department of Health as a third-party reviewer provides a path forward for such tests to receive authorization.
FDA Approvals


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