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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
10 Kitchen Gadgets That Help You Lose Weight
Nutrition experts share their favorite tools that make it easier to eat less.
The Right Way to Cut a Mango
Pamela Salzman shows us a better way to avoid the pit and cut the summer fruit.
5 Science-Backed Ways to Have a Healthier Weekend
Don't let the two days off derail your wellness goals.
Why Do Some Songs Drive Us to Tears?
Is Adele making you cry ? or are you using Adele to bring on the waterworks? It's a little bit of both.
What Happens to Our Bodies in Space?
What you need to know to thrive as a tourist in outer space.
Confusion Grips Senate GOP Ahead of Health Care Vote
Senate Republicans scramble to reach consensus on a way to move forward with health care as they head into a critical weekend with a vote expected next Tuesday.
New Drug Lights Brain Tumors, May Prolong Survival
The new FDA approved drug, Gleolin, "a game changer" according to experts, is helping surgeons to better visualize tumors making complete removal much easier.
What Is Glioblastoma? McCain's Brain Tumor Is an Aggressive Type of Cancer
A glioblastoma is a highly malignant form of cancer that spreads quickly due to its association with a large network of blood vessels in the brain.
Teen Vogue's 'Guide to Anal Sex' Spawns Backlash
The debate highlights the lack of LGBTQ sex education in the U.S.
How to Use One Small Daily Ritual to Tackle a Big Goal
Blogging daily about their journey turned one couple's struggle with unemployment into a thriving business.
Channel: Medscape Hematology-Oncology Headlines
EU Panel Likes Lung Cancer Drug and MoreEU Panel Likes Lung Cancer Drug and More
The Committee for Medicinal Products for Human Use recommended for approval multiple oncology drugs this month.
International Approvals
Noninvasive Urine Test Predicts Bladder Cancer RecurrenceNoninvasive Urine Test Predicts Bladder Cancer Recurrence
A new noninvasive test was more predictive of bladder cancer recurrence than standard cytology and cystoscopy.
Medscape Medical News
Discuss Delaying Reconstruction After MastectomyDiscuss Delaying Reconstruction After Mastectomy
Higher risk for serious wound complications, more breast surgeries, and delays in adjuvant therapy follow immediate reconstruction.
Medscape Medical News
Melanoma, Parkinson's: See One, Be Aware of the OtherMelanoma, Parkinson's: See One, Be Aware of the Other
A new study confirms that these two diseases may be risk factors for one another.
Medscape Medical News
Five Obstacles to Active Surveillance in Three CancersFive Obstacles to Active Surveillance in Three Cancers
Active surveillance has become a buzzword in oncology and makes most sense in three cancers, but there are a host of common challenges with this approach.
Medscape Medical News
New Model to Estimate GFR Improves Dose Accuracy of CarboplatinNew Model to Estimate GFR Improves Dose Accuracy of Carboplatin
Will a new model for estimating glomerular filtration rate (GFR) become standard of care for calculating carboplatin dosing?
Medscape Medical News
CDK Inhibitors in Breast Cancer: Manageable Toxicity ProfileCDK Inhibitors in Breast Cancer: Manageable Toxicity Profile
CDK inhibitors represent a new treatment option in HR+ breast cancer. A new review article shows that their overall toxicity is low and can be adequately managed.
Medscape Medical News
FDA OKs First 'Extended' Adjuvant Treatment for HER2 Breast CancerFDA OKs First 'Extended' Adjuvant Treatment for HER2 Breast Cancer
The FDA has approved a new drug for patients with early-stage HER2-positive breast cancer who have completed trastuzumab and want "extended" adjuvant therapy.
FDA Approvals
Surgery No Better Than Observation for Early Prostate CancerSurgery No Better Than Observation for Early Prostate Cancer
Long-term follow-up of men in the PIVOT study shows that observation, not surgical intervention, may be a better option. But not for all men, says an expert.
Medscape Medical News
'Incredibly Exciting': CAR T Cells as 'Living Drugs''Incredibly Exciting': CAR T Cells as 'Living Drugs'
Unlike drugs that gradually disappear from the body, CAR T cells are 'living drugs' that persist in the body for years.
Medscape Medical News


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