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.

News Feeds

Channel: BloodMed 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
Thyroid Nodule Size Irrelevant When It Comes to MalignancyThyroid Nodule Size Irrelevant When It Comes to Malignancy
A meta-analysis shows no significant differences in malignancy or false-negative rates in small versus large thyroid nodules.
Medscape Medical News
Doctors' Kids Absorb a LotDoctors' Kids Absorb a Lot
An internist's cancer diagnosis triggers pointed questions from her two young children, who evidently have been overhearing a lot about medicine for years.
Medscape Medical News
How a Cancer Doctor Really Feels About Second OpinionsHow a Cancer Doctor Really Feels About Second Opinions
Private-practice radiation oncologist Andrew Neuschatz talks about the nuances of second opinions in oncology.
Medscape Oncology
Why Are Cancer Clinical Trials so Slow? 5 Things to KnowWhy Are Cancer Clinical Trials so Slow? 5 Things to Know
The stakes couldn't be higher for cancer patients and their families, yet cancer clinical trials move at a frustratingly slow pace.
Medscape Oncology
Study in Advanced CRC Shows 'Best of Precision Medicine'Study in Advanced CRC Shows 'Best of Precision Medicine'
Dr Kerr discusses the 'preliminary results and interesting' study of temozolomide and irinotecan in advanced refractory colorectal cancer.
Medscape Oncology
Skipping Cancer Screening Tied to Higher All-Cause MortalitySkipping Cancer Screening Tied to Higher All-Cause Mortality
A secondary analysis of a landmark cancer screening trial found that all-cause mortality was higher in participants who did not adhere to screening guidelines than in those who did.
Medscape Medical News
Complexity 'Biggest Challenge' of Metastatic Breast CancerComplexity 'Biggest Challenge' of Metastatic Breast Cancer
The complexity and heterogeneity of metastatic breast cancer may be the biggest challenge in tackling this disease and underlies the lack of gains since the turn of the century.
Medscape Oncology
Gleason Score May Slightly Lowball Black Men's Mortality RiskGleason Score May Slightly Lowball Black Men's Mortality Risk
The Gleason score may underestimate mortality risk in black prostate cancer patients. But the absolute differences with other racial groups were small.
Medscape Medical News
Liquid Biopsy Tracks Herceptin Resistance in HER2+ Gastric CancerLiquid Biopsy Tracks Herceptin Resistance in HER2+ Gastric Cancer
Circulating tumor DNA profiling can provide novel insights into gene alterations that underlie trastuzumab resistance in HER2+ metastatic gastric cancer.
Medscape Medical News
Four Major Developments in Multiple Myeloma: ASH 2018Four Major Developments in Multiple Myeloma: ASH 2018
Joseph Mikhael discusses important new treatment options for multiple myeloma therapy as profiled at ASH 2018.
Medscape Oncology