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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 OKs Alpelisib, First PI3K Inhibitor for Breast CancerFDA OKs Alpelisib, First PI3K Inhibitor for Breast Cancer
The FDA approved alpelisib (Piqray, Novartis) to be used with the FDA-approved fulvestrant in certain patients with breast cancer. A companion test was also approved.
FDA Approvals
No Race Difference in Prostate Cancer With Equal Access No Race Difference in Prostate Cancer With Equal Access
Black men with nonmetastatic prostate cancer did not appear more likely to die from this disease than white men when given similar access to care and standardized treatment, an analysis found.
Medscape Medical News
FDA Approves First Mesothelioma Treatment in 15 YearsFDA Approves First Mesothelioma Treatment in 15 Years
The NovoTTF-100L System is approved for use in combination with pemetrexed plus platinum-based chemotherapy in patients with malignant pleural mesothelioma.
FDA Approvals
FDA Issues Class l Recall of Three Blood Test AnalyzersFDA Issues Class l Recall of Three Blood Test Analyzers
The agency alerted hospitals, labs, and other providers after recurring complaints of inaccurate platelet counts with three Beckman Coulter models. More than 2000 labs in the US may be affected.
News Alerts
Oncology Care Providers Do Discuss Lifestyle With PatientsOncology Care Providers Do Discuss Lifestyle With Patients
Oncologists and related professionals report counseling patients on weight loss, diet, and exercise, but few report making referrals to support lifestyle changes.
Medscape Medical News
Asbestos: A Public Health Crisis of 'Unprecedented Scale'Asbestos: A Public Health Crisis of 'Unprecedented Scale'
Dramatic increases in mesothelioma and other asbestos-related cancers and lung diseases are expected to continue for decades in developing countries.
Medscape Medical News
AI Beats Radiologists for Accuracy in Lung Cancer ScreeningAI Beats Radiologists for Accuracy in Lung Cancer Screening
A deep-learning algorithm detected fewer false positives and negatives when screening for lung cancer with low-dose computed tomography (LDCT) scans.
Medscape Medical News
Your First ASCO: Remember, the Goal Is to Feel InspiredYour First ASCO: Remember, the Goal Is to Feel Inspired
Junior faculty oncologist Bishal Gyawali talks about how first-time ASCO attendees can make the most of their experience.
Medscape Oncology
Cancer Now Accounts for 1 in 3 Deaths; Prevention Is KeyCancer Now Accounts for 1 in 3 Deaths; Prevention Is Key
Cancer is now the leading cause of death in Canada, and abdominal adiposity is set to become the second leading preventable cause of cancer by 2042.
Medscape Medical News
Body Adiposity, Not BMI, Key to CV Risk in Colorectal CancerBody Adiposity, Not BMI, Key to CV Risk in Colorectal Cancer
"One of the exciting developments is there are now automated techniques that can precisely quantify the amount of muscle and fat from CT images." ? Justin Brown, Pennington Biomedical Research Center.
Medscape Medical News

 

 
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