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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
Medicare Moves Closer to CAR-T Coverage PolicyMedicare Moves Closer to CAR-T Coverage Policy
A new national policy for paying for the costly therapy includes a requirement to monitor patients for at least 2 years, as well as other conditions; the proposal is now open for comments.
Medscape Medical News
Darolutamide: New Standard of Care in Nonmetastatic CRPC?Darolutamide: New Standard of Care in Nonmetastatic CRPC?
An investigational agent significantly extended metastasis-free survival in patients with nonmetastatic castration-resistant prostate cancer (CRPC).
Medscape Medical News
Brain Mets: Choosing and Sequencing Local vs Systemic TherapiesBrain Mets: Choosing and Sequencing Local vs Systemic Therapies
Dr Mark Kris discusses the importance of multimodality decision-making in the treatment of brain metastasis.
Medscape Oncology
Cancer Drug Has Money-Back Guarantee -- in ChinaCancer Drug Has Money-Back Guarantee -- in China
The top-selling drug is for the treatment of metastatic breast cancer.
Medscape Medical News
Novel Radiotherapy Shows Promise in Heavily Pretreated mCRPCNovel Radiotherapy Shows Promise in Heavily Pretreated mCRPC
A novel targeted radiolabeled small molecule appears to improve overall survival in men with metastatic castration-resistant prostate cancer (mCRPC).
Medscape Medical News
Gap in Cancer Death Rates Narrows Between Blacks, WhitesGap in Cancer Death Rates Narrows Between Blacks, Whites
Disparities in death rates from the most common cancers are closing between African Americans and whites as blacks experience steeper declines in some cancers.
Medscape Medical News
'Misleading' Report Highlights Absurdity of Today's Clinical Trials'Misleading' Report Highlights Absurdity of Today's Clinical Trials
The very poor reporting of a recent trial with an utterly irrelevant result does nobody any good, argues David Kerr.
Medscape Oncology
The Blood-Tumor Barrier Is Critical in Brain Metastasis ControlThe Blood-Tumor Barrier Is Critical in Brain Metastasis Control
Mark Kris talks about the nuances of managing a common problem for lung cancer patients--brain metastases.
Medscape Oncology
'Remarkable' New Benefit in HER2+ Breast Cancer 'Remarkable' New Benefit in HER2+ Breast Cancer
Roughly half of patients with HER2-positive, early stage breast cancer have residual disease after initial drug therapy and then surgery; T-DM1 may improve their outcomes.
Medscape Medical News
Newer HCV Drugs Reduce Mortality, Liver Cancer RiskNewer HCV Drugs Reduce Mortality, Liver Cancer Risk
Treatment with direct-acting antivirals appears to reduce the risk of death and liver cancer among patients with chronic hepatitis C virus (HCV), including those with cirrhosis, new data has shown.
Medscape Medical News

 

 
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