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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
Trump Is Biggest Threat to Rights: Roe v. Wade Attorney
On the 44th anniversary of the landmark abortion rights decision, Sarah Weddington feels like her life's work is more at risk than it's ever been.
Device Gives Speechless a Voice More Like Their Own
For 8-year-old Leo True-Frost, who has cerebral palsy, the difference means a machine that helps him speak no longer sounds like a robotic man.
President Trump Signs First Executive Order ? on Obamacare
The executive order is aimed at "minimizing the economic burden" of the health care law "pending repeal," and says Trump's policy is prompt repeal.
Rare Virus Hits Pet Rat Breeders, CDC Says
At least eight people who breed pet rats have been infected with an unusual and sometimes deadly virus called Seoul virus, the CDC said.
5 Obamacare Rules Trump Could Change Now
The Trump administration is in place and one of his first targets was Obamacare, his predecessor's signature policy.
Skin Cancer Cream Killed Dogs, FDA Says
A cream used to treat and prevent skin cancer has killed five dogs who accidentally ate some, the FDA says.
Private Insurers: Source or Solution for Obamacare Woes?
President-elect Trump says private insurers companies can lower costs and get health insurance to more Americans. But Obamacare already uses them.
Ohio Grandma Was Expected to Die. Then She Woke Up
Just two months ago, the family of Eloise Barnette was saying good-bye.
When Seeing the Most Depraved Side of the Internet Is Your Job
Machines are getting smarter, but human moderators are still crucial in the fight against child exploitation, bestiality and other violent crimes.
McKesson to Pay $150 Million in Painkiller Reporting Case
The Justice Department said the company failed to put in a system to detect suspicious orders of painkillers which are frequently misused.
Channel: Medscape Hematology-Oncology Headlines
Debate: Does Screening Mammography Lead to Breast Cancer Overdiagnosis?Debate: Does Screening Mammography Lead to Breast Cancer Overdiagnosis?
Dr Laurie Margolies moderates a debate on screening mammography. Does it lead to overdiagnosis of breast cancer? When is screening best done, and how should we inform patients?
Medscape Ob/Gyn
Nivolumab: New Treatment Option in Advanced Gastric CancerNivolumab: New Treatment Option in Advanced Gastric Cancer
In a heavily pretreated population with recurrent or refractory disease, nivolumab improved overall survival and other outcomes.
Medscape Medical News
ECCO 2017 -- Only Truly Multidisciplinary Cancer ConferenceECCO 2017 -- Only Truly Multidisciplinary Cancer Conference
The European CanCer Organisation is breaking new ground this year, with an inaugural meeting that promises a unique multidisciplinary view of new data.
Medscape Medical News
First Drug Approved for Marginal Zone Lymphoma First Drug Approved for Marginal Zone Lymphoma
Ibrutinib is the first drug to be specifically approved for marginal zone lymphoma, which accounts for about 12% of all non-Hodgkin?s lymphomas.
FDA Approvals
Breast Cancer Campaign Based on Lemons Goes ViralBreast Cancer Campaign Based on Lemons Goes Viral
A campaign to illustrate the potential symptoms of breast cancer using altered images of lemons to overcome taboos regarding the disease has gone viral and has been seen by women around the world.
Medscape Medical News
New Rx for Advanced Colorectal Cancer: ExerciseNew Rx for Advanced Colorectal Cancer: Exercise
In a first-time finding among patients with metastatic disease, daily exercise was associated with both improved overall and progression-free survival.
Medscape Medical News
A Founder of Medical Oncology Dies at Age 90A Founder of Medical Oncology Dies at Age 90
Al Owens innovated throughout his career at Johns Hopkins, including helping start the subspecialty of medical oncology, and left behind one of the great American cancer centers.
Medscape Medical News
Intermittent ADT in Prostate Cancer: Jury Still OutIntermittent ADT in Prostate Cancer: Jury Still Out
The use of intermittent androgen deprivation therapy (ADT) in prostate cancer remains controversial, and two groups of experts offer opposing views on the topic.
Medscape Medical News
Big Drop in Prostate Cancer Treatment in Recent Years in USBig Drop in Prostate Cancer Treatment in Recent Years in US
Significantly fewer men are receiving curative treatment for prostate cancer now than in previous years, but of the men who are diagnosed with the disease, treatment has remained largely unchanged.
Medscape Medical News
PET Scan to 'Fine Tune' Chemo for Esophageal CancerPET Scan to 'Fine Tune' Chemo for Esophageal Cancer
Who wouldn't want to switch chemotherapies if one wasn't working? A new study shows that PET scans can guide this decision and improve efficacy.
Medscape Medical News


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