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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
Helping Patients Manage the Anxiety Behind CPMHelping Patients Manage the Anxiety Behind CPM
Does contralateral prophylactic mastectomy reduce breast cancer survivors' anxiety over the long term?
Medscape Oncology
TMB: A Potential Pan-Cancer Biomarker for Immunotherapy?TMB: A Potential Pan-Cancer Biomarker for Immunotherapy?
High tumor mutational burden (TMB) is associated with improved survival after treatment with immune checkpoint inhibitors across several solid cancers, but it is not yet ready for use in clinical practice.
Medscape Medical News
Many Oncologists Unfamiliar With Needs of LGBTQ Cancer PatientsMany Oncologists Unfamiliar With Needs of LGBTQ Cancer Patients
Limited knowledge about how to care for LGBTQ patients with cancer underscores a need for building gay-centric clinical and cultural competency.
Medscape Medical News
Risk for Suicide Spikes After Cancer DiagnosisRisk for Suicide Spikes After Cancer Diagnosis
Two new studies show that after a cancer diagnosis, the risk for suicide increases significantly and may be as much as four times higher than in the general population.
Medscape Medical News
Clinical Trials Too Often Exclude 'Real-World' Cancer PatientsClinical Trials Too Often Exclude 'Real-World' Cancer Patients
Restrictive clinical trial criteria frequently exclude patients with comorbidities from important cancer studies, but such patients might benefit from the treatment being study.
Medscape Medical News
Chemotherapy for Relapsing-Remitting MS?Chemotherapy for Relapsing-Remitting MS?
Perry Wilson dissects a new JAMA study that is seemingly about nonmyeloablative hematopoietic stem cell transplantation vs disease-modifying therapy for relapsing-remitting multiple sclerosis.
Medscape
USPSTF Reaffirms Drugs for Women at High Risk for Breast CancerUSPSTF Reaffirms Drugs for Women at High Risk for Breast Cancer
In new draft guidelines, the US Preventive Services Task Force (USPSTF) continues to recommend the use of chemopreventive agents for women at high risk for breast cancer.
Medscape Medical News
High Fiber, Whole Grains Linked to Lower CVD, Diabetes, Cancer RiskHigh Fiber, Whole Grains Linked to Lower CVD, Diabetes, Cancer Risk
An ambitious review of 40 years of research commissioned by the WHO shows that higher intake of dietary fiber and whole grains is related to a 'surprisingly broad' range of diseases.
Medscape Medical News
Cabozantinib Now Also FDA Approved for Liver CancerCabozantinib Now Also FDA Approved for Liver Cancer
A new indication allows cabozantinib to be used in patients with hepatocellular carcinoma who have previously been treated with sorafenib.
FDA Approvals
High Rate of Complications in 'Real-World' Lung Cancer Scanning High Rate of Complications in 'Real-World' Lung Cancer Scanning
When performed in a community setting rather than as part of a clinical trial, the rate of complications from lung cancer screening are twice as high.
Medscape Medical News

 

 
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