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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
Approval in 2 Weeks via FDA's New Oncology Drugs ReviewApproval in 2 Weeks via FDA's New Oncology Drugs Review
Approval of a new indication took only 2 weeks with the FDA's new program for reviewing oncology drugs. It involved expanded use of the lymphoma drug brentuximab vedotin.
FDA Approvals
EU Changes Mind on Nivo Plus Ipi for Kidney CancerEU Changes Mind on Nivo Plus Ipi for Kidney Cancer
Positive opinions were given for the first-line use of the immunotherapy combination nivolumab and ipilimumab in kidney cancer and for an extension of indication for blinatumomab in certain leukemia patients.
International Approvals
Lung Cancer Advances: A Year Like No OtherLung Cancer Advances: A Year Like No Other
2018 has been a year of extraordinary advances in lung cancer treatment.
Medscape Oncology
EU Green Lights Apalutamide for Nonmetastatic CRPCEU Green Lights Apalutamide for Nonmetastatic CRPC
The next-generation antiandrogen has received a positive opinion for nonmetatatic castration-resistant prostate cancer (CRPC), considered to be an unmet medical need.
International Approvals
Kerr, Tannock on the 'Triangle of Mediocrity' Holding Oncology BackKerr, Tannock on the 'Triangle of Mediocrity' Holding Oncology Back
With nearly 75 years of oncology experience between them, Drs Kerr and Tannock take aim at the pitfalls of precision medicine and the 'triangle of mediocrity' among academic medicine, pharma companies, and the FDA.
Medscape Oncology
Insurer Faces $25.5m Payout After Denial of Proton TherapyInsurer Faces $25.5m Payout After Denial of Proton Therapy
Health insurer Aetna denied proton therapy because it was 'experimental.' This jury verdict raises the possibility that other denial-of-care suits will follow.
Medscape Medical News
'Shocking' Results With Minimally Invasive Hysterectomy'Shocking' Results With Minimally Invasive Hysterectomy
The surprising results of two new studies prompt a warning from Dr Maurie Markman that minimally invasive radical hysterectomy should not be considered standard of care for early cervical cancer.
Medscape Oncology
Teenage Obesity & Fourfold Increase in Risk for Pancreatic CancerTeenage Obesity & Fourfold Increase in Risk for Pancreatic Cancer
Data linking two large Israeli databases suggest that obesity during teenage years increases the risk for adult pancreatic cancer fourfold. Being overweight increases the risk twofold.
Medscape Medical News
Downplaying Drug Toxicity in Oncology Clinical TrialsDownplaying Drug Toxicity in Oncology Clinical Trials
Incomplete reporting that downplayed drug-related adverse events was identified in 43% of reports of cancer drug trials published by top medical journals.
Medscape Medical News
Chemo-Radiation for Distant Mets Ups Survival in Anal CancerChemo-Radiation for Distant Mets Ups Survival in Anal Cancer
Extended-field chemo-radiation therapy should be considered a potentially curative treatment option for some patients with advanced anal cancer.
Medscape Medical News

 

 
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