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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
Worry After Prostatectomy a Self-fulfilling ProphecyWorry After Prostatectomy a Self-fulfilling Prophecy
Three years after a radical prostatectomy, men with the personality trait of neuroticism scored worse on urinary, bowel, sexual, and hormonal domains.
Medscape Medical News
'Optimistic' Longer-term Outcomes for Metastatic Melanoma'Optimistic' Longer-term Outcomes for Metastatic Melanoma
Targeted therapy and immunotherapy are showing promising longer-term outcomes in metastatic melanoma. Dr Weber reviews two new studies.
Medscape Oncology
To Treat and Prevent Brain Mets, Use Best Therapy Up FrontTo Treat and Prevent Brain Mets, Use Best Therapy Up Front
Use newer, more effective targeted therapies first when possible to treat and stave off brain metastases in oncogene-driven lung cancers, says Mark Kris.
Medscape Oncology
Clinical Trials With Venetoclax on Hold Because of Deaths Clinical Trials With Venetoclax on Hold Because of Deaths
The FDA issued a partial hold on all ongoing clinical trials evaluating venetoclax in multiple myeloma because of an excessive number of deaths seen in the BELLINI study.
News Alerts
E-Cig Giant Juul Touts Positive Study in a Questionable JournalE-Cig Giant Juul Touts Positive Study in a Questionable Journal
Juul Laboratories, which dominates the US e-cigarette market, is promoting a positive, peer-reviewed study of one of its products that is published in a 'predatory' journal.
Medscape Medical News
Severe Adverse Events When Osimertinib Follows ImmunotherapySevere Adverse Events When Osimertinib Follows Immunotherapy
Severe immune-related adverse events have been observed when osimrtinib was given after, but not before, immune checkpoint inhibitors in patients with advanced NSCLC.
Medscape Medical News
Geriatric Oncology Guidelines Must Be Tailored to ResourcesGeriatric Oncology Guidelines Must Be Tailored to Resources
Yes, elderly patients with cancer are different in many ways from younger patients, but geriatric oncology guidelines need to take into account the resources available to them, not just their age.
Medscape Medical News
Overturning Dogma -- Using Testosterone in Prostate CancerOverturning Dogma -- Using Testosterone in Prostate Cancer
Testosterone replacement therapy decreased the risk for biochemical recurrence in some men and delayed time to recurrence in others, findings that took investigators by surprise.
Medscape Medical News
Mutation Status May Drive Sequential vs Combo Treatment in CRCMutation Status May Drive Sequential vs Combo Treatment in CRC
David Kerr reviews a new study on sequential versus combination chemotherapy for advanced colorectal cancer, asking whether this study will change readers' practice.
Medscape Oncology
Tool Helps Decide Who Needs Prostate Cancer Tx Immediately Tool Helps Decide Who Needs Prostate Cancer Tx Immediately
Clinicians and patients unsure whether to opt for conservative active surveillance or radical treatment for nonmetastatic prostate cancer can use a new, novel, free online tool.
Medscape Medical News


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