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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
Researchers Find Way to Convert Type A Blood to Type OResearchers Find Way to Convert Type A Blood to Type O
Researchers found a way to use gut enzymes to convert type A blood to the universal donor type O blood, possibly paving the way for increasing the supply of type O blood.
Medscape Medical News
Daratumumab Boosts Outcomes in Newly Diagnosed Multiple MyelomaDaratumumab Boosts Outcomes in Newly Diagnosed Multiple Myeloma
The monoclonal antibody shows evidence of improving outcomes and is being proposed as offering a 'new standard of care' for patients newly diagnosed with the disease who are eligible for transplant.
Medscape Medical News
Novel Drug Could Be 'Disease Modifying' in Sickle Cell DiseaseNovel Drug Could Be 'Disease Modifying' in Sickle Cell Disease
An investigational agent, the first-in-class drug voxelotor, is seen as potentially ?disease-modifying' as it targets mechanisms that cause anemia.
Medscape Medical News
'The Cancer in Bed Two': Why Language Matters in Medicine'The Cancer in Bed Two': Why Language Matters in Medicine
Did the patient fail treatment, or did the treatment fail the patient? Don Dizon speaks with Tatiana Prowell about how the language we use with patients actively influences our and their thoughts.
Medscape Oncology
Leuprorelin Depot Handling Errors Prompt EMA ReviewLeuprorelin Depot Handling Errors Prompt EMA Review
Handling errors with leuprolide acetate depot formulations have reportedly led to problems such as leakages from the syringe or failure to deliver implants from the applicator, the EMA says.
News Alerts
Measurable Residual Disease in AML Ups Post-HSCT Relapse RiskMeasurable Residual Disease in AML Ups Post-HSCT Relapse Risk
Measurable residual disease, detected with next-generation genomic sequencing, is associated with a significantly increased risk for relapse. Experts question the prognostic ability of other assessment tools.
Medscape Medical News
Shorter-term Herceptin Sufficient? No AgreementShorter-term Herceptin Sufficient? No Agreement
Different conclusions have been drawn from similar findings, perhaps as a result of subjective margins for equivalence in HER2+ breast cancer research.
Medscape Medical News
FDA Updates Regulations on MammographyFDA Updates Regulations on Mammography
Proposed amendments to mammography regulations include increased reporting to patients and providers and greater transparency about mammography facilities.
FDA Expert Commentaries and Interviews
Improving Palliative Care for Patients With Metastatic Breast CancerImproving Palliative Care for Patients With Metastatic Breast Cancer
The key to increasing palliative care is to incorporate it into routine metastatic breast cancer care. Although improvements have been made for patients and families, more efforts are needed.
Medscape Oncology
A Simple Way to Make Genetic Counseling More EfficientA Simple Way to Make Genetic Counseling More Efficient
Does information up-front improve patient knowledge after genetic counseling?
Medscape Oncology

 

 
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