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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
Novel PI3K inhibitor for Breast Cancer: Success at Last?Novel PI3K inhibitor for Breast Cancer: Success at Last?
A novel and highly selective PI3K inhibitor for breast cancer may succeed where two other similar but unselective drugs failed because of toxicity.
Medscape Medical News
'Outstanding' Ovarian Cancer PFS With Olaparib Maintenance'Outstanding' Ovarian Cancer PFS With Olaparib Maintenance
Patients with newly diagnosed advanced ovarian cancer have a marked increase in progression-free survival with maintenance olaparib after successful first-line chemotherapy, phase 3 study data indicates.
Medscape Medical News
Palbociclib in Breast Cancer: New Overall Survival Data Palbociclib in Breast Cancer: New Overall Survival Data
Final results from the PALOMA 3 study show that addition of palbociclib to fulvestrant improves overall survival by 7 months, but the result was not statistically significant. So now what?
Medscape Medical News
New Hope in Triple Negative Breast Cancer With ImmunotherapyNew Hope in Triple Negative Breast Cancer With Immunotherapy
For the first time, a survival benefit with immunotherapy has been shown in breast cancer with atezolizumab plus chemotherapy in triple negative patients.
Medscape Medical News
Details of Study That Led to Radium-223 Restriction in EuropeDetails of Study That Led to Radium-223 Restriction in Europe
Details of the study that led to the restriction of the indication for the radiopharmaceutical radium-223 in prostate cancer have now been reported, and that restriction is questioned.
Medscape Medical News
Precision RT May Prove Curative in Oligometastatic CancerPrecision RT May Prove Curative in Oligometastatic Cancer
Precision, high-dose radiotherapy targeting isolated metastatic lesions significantly boosts overall and progression-free survival, with good quality of life for patients with oliogometastatic tumors.
Medscape Medical News
No Chemo; Rituximab Alone for Indolent Lymphoma?No Chemo; Rituximab Alone for Indolent Lymphoma?
New results showing a 10-year overall survival rate of 73% with rituximab alone suggest that patients can skip chemotherapy. But this may not be appropriate for all patients, suggests an expert.
Medscape Medical News
Breast Tomosynthesis Better Than Mammography?Breast Tomosynthesis Better Than Mammography?
A simplified, single-view version of digital breast tomosynthesis may increase the detection of breast cancer over standard digital mammography, with lower radiation exposure, say Swedish scientists.
Medscape Medical News
Immunotherapy Combos: Will Cost Put Them out of Reach?Immunotherapy Combos: Will Cost Put Them out of Reach?
Immunotherapy has already revolutionized cancer care. Combining various immunotherapies promises even greater success, but will the already high cost of these therapies put combos out of reach?
Medscape Medical News
Given Access, Cancer Patients Read Their Doc's NotesGiven Access, Cancer Patients Read Their Doc's Notes
When given easy access to their medical records, cancer patients positively report trust in their physicians and better understanding of treatments, diagnosis, and side effects.
Medscape Medical News


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