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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
Most people with back pain get bad treatment
Poor treatment is fueling the opioid epidemic
Controversy swirls around likely CDC appointee
The president's likely pick to lead the Centers for Disease Control and Prevention is facing significant criticism due to past research misconduct allegations.
No more menthol? FDA may limit tobacco flavors
FDA asks for input on limiting cigars, chewing tobacco, and e-cigarettes, too
Alzheimer's epidemic worsens in U.S.
Daughters, other relatives carry most of the responsibility
Here's why cockroaches are indestructible
Genome sequencing reveals the secrets of this nasty insect
Abortion rates fall globally
Countries with stricter abortion laws have higher abortion rates
CDC strengthens yellow fever travel warning
Four travelers have died from the virus. Even areas near big cities are affected.
These are the happiest cities in America ? and they may surprise you
Big cities may be cool, but these small cities are happier, this survey says.
Healthy Instant Pot meals you can make in minutes
Delicious, healthy ? even decadent ? meals you can make ahead in your Instant Pot and eat all week.
How pro-abstinence officials ended federal teen pregnancy program
Political appointees ended the HHS program over objections of career experts
Channel: Medscape Hematology-Oncology Headlines
AI Beats Pathologists in Predicting Survival in Brain CancerAI Beats Pathologists in Predicting Survival in Brain Cancer
A novel approach using artificial intelligence (AI) performed better than human pathologists when predicting overall survival for patients with gliomas.
Medscape Medical News
PapSEEK: Potential Screening Test for Gynecologic CancersPapSEEK: Potential Screening Test for Gynecologic Cancers
A multiplex panel that detects mutations in endometrial and ovarian cancers using samples from a routine Pap test and that also provides an analysis of aneuploidy may emerge as a screening tool.
Medscape Medical News
FDA Issues Update on Rare Breast Implant-Associated LymphomaFDA Issues Update on Rare Breast Implant-Associated Lymphoma
As of September 30, 2017, the FDA has received a total of 414 medical device reports of anaplastic large cell lymphoma associated with breast implants, most involving implants with textured surfaces.
News Alerts
More Cases of Severe Myocarditis Linked to ImmunotherapyMore Cases of Severe Myocarditis Linked to Immunotherapy
Increased reporting of potentially fatal heart problems among cancer patients treated with immunotherapy calls for heightened awareness and urgent referral for evaluation.
Medscape Medical News
FDA Approval Tweaks Decades-Old Treatment of Hodgkin's LymphomaFDA Approval Tweaks Decades-Old Treatment of Hodgkin's Lymphoma
The approval adds to the indications with which brentuximab can used in the treatment of classic Hodgkin's lymphoma.
FDA Approvals
Successful CAR T-Cell Tx Needs Good T Cells to Begin WithSuccessful CAR T-Cell Tx Needs Good T Cells to Begin With
Starting with poor-quality T cells may be a key problem in the manufacturing of effective and functional CAR T cells, which may explain why it has been difficult to apply this approach to all cancers.
Medscape Medical News
Improving Diversification of Cancer Patients in Clinical TrialsImproving Diversification of Cancer Patients in Clinical Trials
Underserved populations experiencing cancer health disparities are underrepresented in clinical trials (CTs). AACR is taking the lead on fixing this disparity with its '2020 by 2020' initiative.
Medscape Medical News
Prior Chlamydia Infection and Doubled Risk for Ovarian CancerPrior Chlamydia Infection and Doubled Risk for Ovarian Cancer
Pelvic inflammatory disease, which is often caused by sexually transmitted disease, increases ovarian cancer risk; Chlamydia appears to double the risk.
Medscape Medical News
Treating Depression Doesn't Prolong Cancer SurvivalTreating Depression Doesn't Prolong Cancer Survival
Yet even without a clear survival benefit, effective depression management provides an improved quality of life that is more valuable than a longer life for some patients with cancer.
Medscape Medical News
Medicare Will Cover Advanced Genetics Testing in Cancer PatientsMedicare Will Cover Advanced Genetics Testing in Cancer Patients
CMS has finalized its coverage for next-generation sequencing (NGS) testing, and patients with cancer who meet the criteria will be reimbursed
Medscape Medical News


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