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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

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: Medscape Hematology-Oncology Headlines
Moderate Intake of Red Meat Tied to Higher Colorectal Cancer RiskModerate Intake of Red Meat Tied to Higher Colorectal Cancer Risk
Consuming moderate amounts of red meat and processed meat is associated with an increased relative risk for colorectal cancer, but eating fiber from bread and cereal may reduce the risk.
Medscape Medical News
Brexit Imperils UK's 'Greatest Gift to Its Citizens': HealthcareBrexit Imperils UK's 'Greatest Gift to Its Citizens': Healthcare
David Kerr discusses the implications of Brexit on the National Health Service.
Medscape Oncology
Prolonged Lung Cancer Screening Boosts Mortality BenefitProlonged Lung Cancer Screening Boosts Mortality Benefit
New data show that CT screening of individuals beyond 5 years can significantly increase survival benefits.
Medscape Medical News
Triple Therapy May Lengthen Survival in Biliary Tract CancersTriple Therapy May Lengthen Survival in Biliary Tract Cancers
Phase 2 findings suggest nab-paclitaxel plus gemcitabine-cisplatin may prolong survival in advanced biliary tract cancers. However, experts urge caution until a phase 3 trial is completed.
Medscape Medical News
Breast Cancer Genetic Testing Guidelines 'Simply Are Not Effective'Breast Cancer Genetic Testing Guidelines 'Simply Are Not Effective'
Kathy Miller discusses current breast cancer genetic testing guidelines and considerations for more widespread genetic testing.
Medscape Oncology
Finding the 'Sweet Spot' With Corticosteroids in Cancer CareFinding the 'Sweet Spot' With Corticosteroids in Cancer Care
Mark Kris discusses optimal corticosteroid dosing in cancer treatment.
Medscape Oncology
Surgeons Find Polyps as Well as EndoscopistsSurgeons Find Polyps as Well as Endoscopists
Endoscopist characteristics should not influence the choice of endoscopist for colorectal cancer screening, researchers say.
Medscape Medical News
Some Dying Cancer Patients Still Receive Active TherapiesSome Dying Cancer Patients Still Receive Active Therapies
Some patients who died within 1 month of being diagnosed with metastatic cancer received aggressive but ineffective anticancer therapy.
Medscape Medical News
Mouthwash Cuts Mucositis Pain, Enough to Make a Difference?Mouthwash Cuts Mucositis Pain, Enough to Make a Difference?
Oral rinse containing doxepin or the combination of diphenhydramine, lidocaine, and antacid may help reduce oral mucositis-related pain in head and neck cancer patients.
Medscape Medical News
Fingerprick PSA Test Has In-Office Results in 12 MinutesFingerprick PSA Test Has In-Office Results in 12 Minutes
Getting the results of a prostate-specific antigen (PSA) test typically takes days or even weeks, but a new test gives point-of-care results in minutes.
Medscape Medical News


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