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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
Skipping Surgery in Rectal Cancer: Better or Worse?Skipping Surgery in Rectal Cancer: Better or Worse?
'Unreliable' assessment of complete clinical response after neoadjuvant chemoradiotherapy for rectal cancer means a watch-and-wait strategy should be followed with caution, suggest results of an expert debate.
Medscape Medical News
Is There a Difference Between Academic and Community Practice?Is There a Difference Between Academic and Community Practice?
'I just hate the thought that they might be warring factions,' one oncologist said.
Medscape Reader Polls
Not Working? Shared Decision Making on RAI for Thyroid CancerNot Working? Shared Decision Making on RAI for Thyroid Cancer
Patients with differentiated thyroid cancer for whom selective treatment with radioactive iodine (RAI) was recommended were dissatisfied with the shared decision making process.
Medscape Medical News
Even Before Cancer Is Diagnosed, Some Clones Have SpreadEven Before Cancer Is Diagnosed, Some Clones Have Spread
Tumor metastases may not be a late event as the current thinking goes, but may be seeded years before cancer is even diagnosed by clones that were 'born to be bad.'
Medscape Medical News
Sport-Inspired Risk Model Improves Cancer Risk PredictionSport-Inspired Risk Model Improves Cancer Risk Prediction
A risk assessment model that incorporates multiple factors to dynamically predict outcomes performs "markedly better" than the "crystal ball" exercises of the past, say researchers.
Medscape Medical News
'No Cure, No Pay' Pilot for Expensive Cancer Drugs'No Cure, No Pay' Pilot for Expensive Cancer Drugs
A new pilot project in the Netherlands experiments with a pay-for-performance model to help reduce drug costs.
Medscape Medical News
Maternal Obesity Linked to High Risk for Childhood LeukemiaMaternal Obesity Linked to High Risk for Childhood Leukemia
Infants born to obese mothers are more likely to develop childhood cancer, especially leukemia.
Medscape Medical News
PRAC Proposes New Measures to Avoid Methotrexate Dosing ErrorsPRAC Proposes New Measures to Avoid Methotrexate Dosing Errors
The measures aim to prevent misunderstandings of the dosing schedule that have led to patients taking the medicine daily instead of weekly for inflammatory diseases.
News Alerts
Dosing Differences Opined for Costly Hemophilia OptionDosing Differences Opined for Costly Hemophilia Option
Achieving the goal of zero bleeds as patients pursue active lives will require divergent dosing, according to PROPEL trial investigators who evaluated whether more exposure to FVIII improves outcomes.
Medscape Medical News
Risk of Meningioma With Cyproterone: EMA Review BeginsRisk of Meningioma With Cyproterone: EMA Review Begins
Products containing the anti-androgens cyproterone and cyproterone acetate ? widely used in European countries ? have been associated with a risk of meningioma.
News Alerts

 

 
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