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Welcome!

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.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

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
FDA Approves Enzalutamide for Nonmetastatic Prostate CancerFDA Approves Enzalutamide for Nonmetastatic Prostate Cancer
The oral therapy becomes the second androgen receptor-targeting therapy to be approved for use in this earlier disease setting.
FDA Approvals
Restriction of Radium-223 Dichloride Recommended in Europe Restriction of Radium-223 Dichloride Recommended in Europe
Use of the novel radiopharmaceutical radium-223 dichloride (Xofigo, Bayer) in prostate cancer should be restricted, according to the European Medicines Agency.
News Alerts
Trastuzumab Increases PFS in Women With HER2/neu Uterine CancerTrastuzumab Increases PFS in Women With HER2/neu Uterine Cancer
This well-done study should prompt oncologists to consider adding trastuzumab to carboplatin-paclitaxel treatment for women with advanced HER2/neu-positive uterine cancer, says Dr Maurie Markman.
Medscape Oncology
Czech Beer Is Designed for Cancer Patients' TastesCzech Beer Is Designed for Cancer Patients' Tastes
The nonalcoholic beer has fewer hops, which reduces bitterness, and is diluted with apple juice for sweetening. Clinicians in the Czech Republic, where beer is the national drink, are handing it out to breast cancer patients.
Medscape Medical News
Medicare Proposes Major Physician Pay ChangesMedicare Proposes Major Physician Pay Changes
CMS proposes a way to pay physicians for checking on images sent by patients and virtual follow-up visits and other changes intended to use technology to expand access to care.
Medscape Medical News
Breast and Gynecological Cancer Risk Is Minimal With IVF Breast and Gynecological Cancer Risk Is Minimal With IVF
The study of more than 250,000 British women shows reassuring data on breast cancer risk; there is an increased ovarian cancer risk but it is small and limited to those with existing risk factors.
Medscape Medical News
New Findings Illuminate 'Black Box of Leukemia' New Findings Illuminate 'Black Box of Leukemia'
Researchers have identified genetic mutations that may occur years before acute myeloid leukemia actually develops, giving new clues as to how the disease begins.
Medscape Medical News
Proton Therapy Trials 'at Risk,' Slow to Enroll PatientsProton Therapy Trials 'at Risk,' Slow to Enroll Patients
Is proton therapy better than standard radiotherapy in the treatment of cancer? Seven major randomized clinical trials have no answers at this point.
Medscape Medical News
Patients With Renal Cancer Could Benefit From Genetic Testing Patients With Renal Cancer Could Benefit From Genetic Testing
Germline mutations in cancer-associated genes are prevalent in patients with advanced renal cancer, but many patients would not be referred for informative genetic testing under current criteria.
Medscape Medical News
Rx Guidelines Do Not Benefit Younger Rectal Cancer PatientsRx Guidelines Do Not Benefit Younger Rectal Cancer Patients
Younger patients with rectal cancer do not derive an overall survival benefit from guideline-driven treatment recommendations, whereas older rectal cancer patients do.
Medscape Medical News

 

 
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