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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.


Glossary of
PNH Terms




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
Europe OKs Brigatinib for ALK+NSCLC, Other Products Europe OKs Brigatinib for ALK+NSCLC, Other Products
A positive opinion was granted for brigatinib, as well as mogamulizumab, a generic version of paclitaxel, and three new biosimilar pegfilgrastim products.
Medscape Medical News
Big Jump in US Spending on Cancer Drugs From 2011 to 2016Big Jump in US Spending on Cancer Drugs From 2011 to 2016
From 2011 to 2016, expenditure on cancer drugs in the United States rapidly accelerated. The first prospective study of its kind tallies the numbers.
Medscape Medical News
New Data on QoL With Apalutamide in Prostate Cancer New Data on QoL With Apalutamide in Prostate Cancer
Delayed deterioration of quality of life was consistent with longer time to symptomatic progression, according to new data from the SPARTAN trial.
Medscape Medical News
MONALEESA-3 Expands Endocrine Tx for Advanced Breast CancerMONALEESA-3 Expands Endocrine Tx for Advanced Breast Cancer
The MONALEESA-3 trial marks an important step forward for endocrine therapies for advanced breast cancer, argues Lidia Schapira.
Medscape Oncology
Could AI Automate Diagnosis (& Targeted Tx) of Lung Cancer?Could AI Automate Diagnosis (& Targeted Tx) of Lung Cancer?
Deep-learning neural networks show promise for automating lung cancer classification and for identifying genetic mutations within seconds.
Medscape Medical News
At Cancer Bell-Ringing Ceremonies, Some Are Angry OnlookersAt Cancer Bell-Ringing Ceremonies, Some Are Angry Onlookers
In American cancer clinics, ringing a bell is now a commonplace celebration for patients who have completed chemotherapy or radiotherapy. But the cathartic ritual leaves some patients feeling very left out.
Medscape Medical News
Baseline Cardiac Imaging in Breast Cancer Needs to ChangeBaseline Cardiac Imaging in Breast Cancer Needs to Change
Women who receive chemotherapy for early-stage breast cancer are screened at baseline for underlying heart disease according to the treatment they are receiving, rather than their actual risk for heart failure.
Medscape Medical News
Dismissing Reduced Abiraterone Dose Is 'Absolutely Wrong'Dismissing Reduced Abiraterone Dose Is 'Absolutely Wrong'
By taking a prostate cancer drug with food, patients can use a quarter of the dose. But an editorial dismissed the idea, which angered a prominent expert.
Medscape Medical News
Seeking High-Quality Cancer Care for EveryoneSeeking High-Quality Cancer Care for Everyone
Outside of clinical trials, we still see large disparities in survival from common cancers among black and white patients.
CDC Expert Commentary
Local Radiation May Improve Survival in Metastatic Cervical CancerLocal Radiation May Improve Survival in Metastatic Cervical Cancer
This new analysis found a significant survival advantage with chemoradiation compared with chemotherapy alone, even in metastatic disease.
Medscape Oncology


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