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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
Health Coverage Rate Ticks Up for Some Asian-American Groups
6.8 percent of people who said they were of Asian descent alone did not have health insurance in 2016 compared to 7.8 percent in 2015, according to the Census.
Parents Demand Answers After Autistic Boy Held on Ground by Officer
Police in Buckeye, Arizona, this week released body camera video showing an officer detaining an autistic teen who the officer believed was using drugs.
What Happens to Your Brain When You Go on a Diet
This is why it's so hard to lose weight.
Death of Scout Schultz Highlights LGBTQ Mental Health Needs
The Georgia Tech student's death highlights the need for better mental health resources for LGBTQ college students, some advocates and health professionals say.
Harvard Medical School Takes Leading Role in LGBTQ Health Care
Harvard Medical School has taken a multi-pronged approach to ensure its physicians-in-training are prepared for the unique needs of LGBTQ patients.
Man Loses 80 Pounds To Donate Liver to Mom
After years of trying to slim down, Brian Bolduc suddenly had a powerful motivation to lose weight: his mother's life depended on it.
Obamacare Is Suddenly in Grave Danger. Here's Why.
A last-ditch Republican effort to repeal Obamacare picked up steam as a key senator opened the door to supporting the bill. Here's what you need to know.
6 Important Life Lessons From 'This Is Us'
Hard-earned life lessons we can steal from the "Big Three."
Get Mad: When Being Angry Can Be Good for You
Go ahead and let it rip. Science says there are some perks to getting angry.
Why Working Out With a Crowd Is Better
When it comes to fitness, there's some truth to the old adage 'strength in numbers.'
Channel: Medscape Hematology-Oncology Headlines
Imatinib a Double-Edged Sword for Pregnant CML PatientsImatinib a Double-Edged Sword for Pregnant CML Patients
On the one hand, imatinib keeps the CML in check; on the other hand, it carries a risk for fetal congenital malformation if taken during pregnancy.
Medscape Medical News
Futile: Prostate Cancer Vaccine Phase 3 Trial EndsFutile: Prostate Cancer Vaccine Phase 3 Trial Ends
Prostvac is an immunotherapy designed to induce T-cell responses and thus kill prostate cancer cells. As a monotherapy, it is not effective.
Medscape Medical News
Severe Health Problems Plague Survivors of Childhood CA Severe Health Problems Plague Survivors of Childhood CA
Specialized healthcare delivery is needed for diverse subgroups of adult cancer survivors with complex medical needs, say researchers.
Medscape Medical News
'Big Alcohol' Deliberately Downplays Cancer Risk'Big Alcohol' Deliberately Downplays Cancer Risk
Global alcohol producers are downplaying the cancer risks associated with drinking in order to protect profits, just like tobacco firms did, say public health experts.
Medscape Medical News
More Than Okay to Reduce Sorafenib Dose for Liver CancerMore Than Okay to Reduce Sorafenib Dose for Liver Cancer
Initially reducing the dosage of the oral therapy did not compromise overall survival in hepatocellular carcinoma and had important benefits.
Medscape Medical News
EU Panel Likes an Array of Cancer ProductsEU Panel Likes an Array of Cancer Products
The Committee for Medicinal Products for Human Use recommended granting marketing authorization to branded, generic, and biosimiliar products.
International Approvals
New Drug Approved for Relapsed Lymphoma: CopanlisibNew Drug Approved for Relapsed Lymphoma: Copanlisib
Patients with follicular lymphoma who have relapsed after at least two prior therapies now have a new option.
FDA Approvals
First Oncology Biosimilar Approved in US: BevacizumabFirst Oncology Biosimilar Approved in US: Bevacizumab
The FDA has approved the first biosimilar for use in the treatment of cancer: Mvasi, or bevacizumab-awwb (equivalent to Avastin).
FDA Approvals
$45 Million for Patients Harmed by Disgraced Breast Surgeon $45 Million for Patients Harmed by Disgraced Breast Surgeon
The private healthcare company that employed disgraced breast cancer surgeon Ian Paterson, who is now in jail, will pay compensation to his patients.
Medscape Medical News
USPSTF Has New Draft Guidance for Cervical Cancer ScreeningUSPSTF Has New Draft Guidance for Cervical Cancer Screening
The only major change is that the USPSTF no longer recommends co-testing in women 30 years and older.
Medscape Medical News


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