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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
'Compelling Evidence' Shows HPV Vaccine Is Working 'Compelling Evidence' Shows HPV Vaccine Is Working
While it is still too soon to estimate reductions in cancer, new data show that HPV vaccination significantly reduces incidence of HPV infections, high-grade cervical lesions, and anogenital warts.
Medscape Medical News
'Out-of-the-Box' Approaches Needed for Glioblastoma'Out-of-the-Box' Approaches Needed for Glioblastoma
More radical approaches to the treatment of glioblastoma are called for as long-term survival remains grim and unchanged, despite efforts to improve outcomes for patients with this disease.
Medscape Medical News
Cancer Patients Have Better Memory, Despite Dip at DiagnosisCancer Patients Have Better Memory, Despite Dip at Diagnosis
Patients with cancer have shown a better memory function before their diagnosis and a slower decline in memory after the diagnosis than adults who have no history of cancer.
Medscape Medical News
After a Patient Death, Top Cancer Center Issues Corrective PlanAfter a Patient Death, Top Cancer Center Issues Corrective Plan
At MD Anderson Cancer Center, an adverse event related to a blood transfusion spiraled into federal investigations.
Medscape Medical News
Prostate Cancer Higher in 9/11 Responders: A Look at WhyProstate Cancer Higher in 9/11 Responders: A Look at Why
The higher incidence of prostate cancer in responders to the 9/11 attacks could be explained by inflammation after exposure to WTC dust, say researchers.
Medscape Medical News
1 in 3 Survivors Still in Pain Years After Cancer Treatment1 in 3 Survivors Still in Pain Years After Cancer Treatment
A year after finishing treatment for their cancer, 1 in 3 survivors ? which amounts to 5 million Americans ? report that they are still in pain, some severe enough to limit their lives.
Medscape Medical News
Venetoclax for Myeloma: Trial on Hold, Now Details of BenefitVenetoclax for Myeloma: Trial on Hold, Now Details of Benefit
Although the BELLINI trial was put on partial hold, the trial was allowed to continue for patients for whom the addition of venetoclax showed benefit. New data now identify this subgroup.
Medscape Medical News
Europe OKs PARP Inhibitor Talazoparib in BRCA+ Breast CancerEurope OKs PARP Inhibitor Talazoparib in BRCA+ Breast Cancer
The new approval is for patients with germline BRCA-mutated, HER2 negative locally advanced or metastatic breast cancer.
International Approvals
Time to Jettison Nearly 400 Medical Practices, Review SaysTime to Jettison Nearly 400 Medical Practices, Review Says
By building on preious research in this area, the authors say the new list will help to eliminate the use of commonly accepted practices that are of low value and may even harm patients.
Medscape Medical News
Could Chinese Cancer Retraction Point to Drive for Higher Standards?Could Chinese Cancer Retraction Point to Drive for Higher Standards?
The authors of a scientific article retracted it just months after publication, invoking Chinese regulators as an explanation.
Medscape Medical News

 

 
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