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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
'It's Not Every Day' This Response Rate Seen in TNBC'It's Not Every Day' This Response Rate Seen in TNBC
A novel targeted therapy provided an incremental improvement in response rate among breast cancer patients with poor prognoses -- those with heavily pretreated metastatic triple-negative breast cancer (TNBC).
Medscape Medical News
Large Trials Cast Doubt on Low-Dose Aspirin's BenefitsLarge Trials Cast Doubt on Low-Dose Aspirin's Benefits
David Kerr discusses recent data on low-dose aspirin and how it will affect his personal use of this very common drug.
Medscape Oncology
'Young Blood' Clinics Shut Down After FDA Action'Young Blood' Clinics Shut Down After FDA Action
Ambrosia Health has shut down its clinics that offered transfusions of plasma from persons aged 16 to 25 years after the FDA issued a statement saying benefits were not scientifically proven.
WebMD Health News
Questions About CAR T Study Lead to Nature, NEJM RetractionsQuestions About CAR T Study Lead to Nature, NEJM Retractions
Research describing how CAR T cells could reach the brain has issues with 'underlying data,' leading to retraction of both a Nature paper and an NEJM review.
Medscape Medical News
Pembrolizumab Active in Non-Clear Cell Kidney Cancer Pembrolizumab Active in Non-Clear Cell Kidney Cancer
Pembrolizumab monotherapy demonstrated promising antitumor activity when used as a first-line therapy agent in patients with non-clear cell renal carcinoma.
Medscape Medical News
ASBrS Calls for Genetic Testing for All Breast Cancer PatientsASBrS Calls for Genetic Testing for All Breast Cancer Patients
The American Society of Breast Surgeons recommends genetic testing for all patients with breast cancer, not just those at highest risk for mutations.
Medscape Medical News
5 Things to Know About CAM and Cancer 5 Things to Know About CAM and Cancer
Complementary medicine use is on the rise in the US, particularly among patients with cancer. This article discusses potential interactions between anticancer medications and herbal remedies.
Medscape Oncology
Rick Simpson Oil: Cancer Cure or Pipe Dream?Rick Simpson Oil: Cancer Cure or Pipe Dream?
He's an Internet sensation, and many cancer patients swear by his eponymous oil. But clinicians and cannabis experts are waving red flags.
Medscape Oncology
Machine Learning May Help With Atypical Ductal HyperplasiaMachine Learning May Help With Atypical Ductal Hyperplasia
A 'machine learning' method identified nearly all malignant cases of atypical ductal hyperplasia, a breast lesion that is mostly benign.
Medscape Medical News
PCPs Discuss Cancer Therapy With Patients, Despite 'Gaps' PCPs Discuss Cancer Therapy With Patients, Despite 'Gaps'
About one third of primary care providers discussed breast cancer treatment decisions with their patients, a new survey shows -- but it's not really their job.
Medscape Medical News

 

 
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