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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
Selumetinib: No Benefit Boosting RAI for High Risk Thyroid CancerSelumetinib: No Benefit Boosting RAI for High Risk Thyroid Cancer
Though previous research showed the MEK1/2 inhibitor could improve RAI effect, the phase 3 trial failed to reach its primary endpoint.
Medscape Medical News
FDA Approves Talazoparib in BRCA+ Breast CancerFDA Approves Talazoparib in BRCA+ Breast Cancer
Compared with standard chemotherapy, the PARP inhibitor extended progression-free survival for patients with advanced BCRA-positive breast cancer.
FDA Approvals
New Guidelines Highlight Hypofractionation for Prostate CaNew Guidelines Highlight Hypofractionation for Prostate Ca
New guidelines on radiotherapy for localized prostate cancer unreservedly recommend moderate hypofractionation and, to a lesser extent, ultrahypofractionation.
Medscape Medical News
New RET Inhibitors Show Reduced Toxicities in Thyroid CancerNew RET Inhibitors Show Reduced Toxicities in Thyroid Cancer
The precision-targeted therapies show early, encouraging signs of reduced toxicities for medullary, thyroid cancers.
Medscape Medical News
Erectile Dysfunction Common in Childhood Cancer SurvivorsErectile Dysfunction Common in Childhood Cancer Survivors
Of a sample of 1021 male survivors of childhood cancer, 29% reported having erectile dysfunction.
Medscape Medical News
Oncologists' Off-Label Prescribing Pits Access Against ReimbursementOncologists' Off-Label Prescribing Pits Access Against Reimbursement
Off-label prescribing in oncology is undergoing a change: Payers are more restrictive in their reimbursement for off-label uses, while oncologists are keen to provide access to new immunotherapies.
Medscape Oncology
FDA OKs New Molecular Assay for Blood Compatibility TestingFDA OKs New Molecular Assay for Blood Compatibility Testing
The ID CORE XT is the second molecular assay approved by FDA for use in transfusion medicine and the first to report genotypes as final results.
FDA Approvals
Should Breast Surgery Be Its Own Medical Specialty?Should Breast Surgery Be Its Own Medical Specialty?
In the US, there are medical specialty boards for thoracic surgery, orthopedic surgery, head and neck surgery, colorectal surgery, and surgery for a variety of other organs/systems. But not the breast.
Medscape Medical News
CAM Popular, but Cancer Patients Unaware of RisksCAM Popular, but Cancer Patients Unaware of Risks
Two studies involving sarcoma patients show that complementary and alternative medicine (CAM) treatments are popular, and most patients seem to be unconcerned about risks, such as interactions.
Medscape Medical News
Cancer Prevention: Don't Smoke, Drink, and Keep Healthy WeightCancer Prevention: Don't Smoke, Drink, and Keep Healthy Weight
Establishing policies to stop people from smoking tobacco is the number one priority in the latest report from the American Cancer Society's cancer control Blueprint series.
Medscape Medical News

 

 
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