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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

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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: NBC News Health
Hypertension: Silent Killer On Rise Amongst Kids
High blood pressure diagnoses are likely to rise after new guidelines released Monday aim at diagnosing and treating the often missed disease.
The Right Way to Take a Nap
The lighting, temperature and timing that will maximize your midday snooze.
A Solar Eclipse Meditation for Health and Healing
The temporary darkening of light, can invite deep, meaningful reflection in our ordinary lives.
Program Aims to Keep OB/GYNs in Rural America
A new program aims to encourage obstetricians and OB/GYNs working in rural America, so women don't have to travel for hours to give birth in maternity wards
Taraji P. Henson: 'These Things Happen to Put a Mirror Up to Humanity'
'When you know better, you do better.'
How Vacationing at a Farm Sanctuary Changed My Urban Perspective
NBC News Journalist Robin Kawakami left the bustle of New York City to spend the weekend with 700 animals in upstate New York.
Why Being a Cat Lady Is Healthy
Research says kitties are good for you.
Meningitis B Killed Their Daughters. Now These Moms Have a Message
Doctors say bacterial meningitis is a horrific disease that most often strikes babies and young adults. If left untreated it can be fatal in a matter of hours.
Did Marijuana Kill This Young Man?
Michael Ziobro's parents believe strong marijuana killed him. But there may be too little evidence on the safety and benefits of cannabis to ever say for sure.
States Work To Keep Opioid Epidemic From Splitting Up Families
States Embrace Initiatives To Keep Opioid Epidemic From Splitting Up Families
Channel: Medscape Hematology-Oncology Headlines
Study: There Is a Free Lunch (for Prostate Cancer Docs)Study: There Is a Free Lunch (for Prostate Cancer Docs)
Payments by pharmaceutical companies to prostate cancer physicians did not lead to an increase in prescribing of two hormonal therapies, a study found.
Medscape Medical News
Tackling the WHO Classification of CNS TumorsTackling the WHO Classification of CNS Tumors
Revised WHO CNS tumor classifications should be updated in real time, two experts tell Medscape.
Medscape Oncology
New Tool for Spiritual Well-Being in Cancer CareNew Tool for Spiritual Well-Being in Cancer Care
A new stand-alone measure for evaluating spiritual well-being in cancer patients receiving palliative care has now been finalized and validated in 10 languages.
Medscape Medical News
ASCO Updates Advice on Drug Therapy for Advanced Lung CancerASCO Updates Advice on Drug Therapy for Advanced Lung Cancer
Practice-changing clinical trial results published since 2015 have prompted an update to the clinical guidance from the American Society of Clinical Oncology (ASCO).
Medscape Medical News
Combining Immunotherapy Agents in NSCLC: Is MYSTIC a Misstep?Combining Immunotherapy Agents in NSCLC: Is MYSTIC a Misstep?
Though they have received a lot of hype as the heir apparent in lung cancer therapy, the early signals on combining immunotherapies are not reassuring, cautions Dr Jack West.
Medscape Oncology
Immunotherapy in Cancer: Hits and Misses, but Charging Ahead Immunotherapy in Cancer: Hits and Misses, but Charging Ahead
Immunotherapy in cancer care has taken off, but recent negative trials and limited success have raised some criticism and concern.
Medscape Medical News
Proposed: Trial of Vitamin Derivative to Prevent MelanomaProposed: Trial of Vitamin Derivative to Prevent Melanoma
The vitamin B3 derivative nicotinamide was previously shown to reduce nonmelanoma skin cancers in a phase 3 trial.
Medscape Medical News
Simple Two-Drug Combo May Inhibit Metastases in Breast CancerSimple Two-Drug Combo May Inhibit Metastases in Breast Cancer
When given perioperatively, the combination inhibits blood and tumor biomarkers predictive of progression and metastases in patients with early breast cancer.
Medscape Medical News
Reducing Nephrotoxicity in Cancer Patients Undergoing CTReducing Nephrotoxicity in Cancer Patients Undergoing CT
Even in patients at low risk for contrast-induced nephropathy, the choice of contrast medium for CT scans can have a big impact on safety.
Medscape Medical News


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