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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
I Stopped Googling Everything, and This Is What Happened to My Brain
By giving up Google, aka my external memory, would my flaccid, idling brain get a little boost?
First Editing of Human Embryos Performed in United States
Technology that allows alteration of genes in a human embryo has been used for the first time in the United States, according to Oregon Health and Science University.
How to Calm Yourself Down When You Have Flight Anxiety
It's possible to conquer your phobia, but it requires a deliberate mental shift.
Opioid Protest Leads to Changes for Drug Wholesaler
McKesson agreed Wednesday to create an independent board chairman, responding to a Teamsters-led shareholder protest over its role in distributing opioids.
Finishing the Course of Antibiotics Not Always Needed
Patients with a bacterial infection may not need to complete a full course of antibiotics, a new report says.
Angelina Jolie Reveals Bell's Palsy Diagnosis
Angelina Jolie tells Vanity Fair that she was diagnosed with hypertension and Bell's palsy
Summer Camp Closed After Accidental Drowning of 5-Year-Old
Benjamin "Kamau" Hosch III drowned in a creek while in an outing at the Camp Cricket Summer Day Camp at Cochran Mill Park in Chattahoochee Hills, Georgia.
Why Indulging in a 'Cheat Meal' Can Make You Healthier
Indulging in that bacon cheeseburger can be healthy ? if you do it right.
Slain NYPD Officer's Widow Gives Birth 2 Years Later
Pei Xia Chen gave birth to a baby girl named Angelina on Tuesday, according to NBC New York.
How Safe Is It for Sen. John McCain to Fly?
Sen. John McCain returns to the U.S. Senate 10 days after recovering from brain surgery to remove an aggressive brain tumor.
Channel: Medscape Hematology-Oncology Headlines
Not Legit? The Superiority of Pemetrexed in Lung CancerNot Legit? The Superiority of Pemetrexed in Lung Cancer
Pemetrexed's reputation for superior efficacy in the initial treatment of lung cancer is based on less-than-definitive data but has resulted in high usage and sales.
Medscape Medical News
Don't Tell John McCain to Fight His CancerDon't Tell John McCain to Fight His Cancer
After Senator John McCain's brain cancer diagnosis, many are trying to encourage him by calling him a tough fighter. An ethicist says it is wrong to do so.
Medscape Business of Medicine
No License: HIFU Prostate Cancer Doc ArrestedNo License: HIFU Prostate Cancer Doc Arrested
Dr Ronald Wheeler has repeatedly been in the news for his prostate cancer diagnosis and treatment beliefs and methods.
Medscape Medical News
Abemaciclib: Another CDK 4/6 Inhibitor for Breast CancerAbemaciclib: Another CDK 4/6 Inhibitor for Breast Cancer
Abemaciclib is heading toward approval and could soon become the third of a new class of drugs for use in breast cancer, joining palbociclib and ribociclib.
Medscape Medical News
'Right' Endocrine Therapy a Question in Youngest BC Patients'Right' Endocrine Therapy a Question in Youngest BC Patients
An analysis of the SOFT and TEXT trial results throws some light on the question of which endocrine therapy is best in young patients with breast cancer.
Medscape Oncology
Despite ACA Coverage, Cancer Patients Still Struggle to PayDespite ACA Coverage, Cancer Patients Still Struggle to Pay
Despite expanded coverage and annual caps, cancer patients still struggle with significant financial challenges that are primarily due to out-of-pocket expenses.
Medscape Medical News
Nipple-Sparing Mastectomy as Safe as Standard ProceduresNipple-Sparing Mastectomy as Safe as Standard Procedures
Nipple-sparing mastectomy has a low rate of disease recurrence, similar to that seen with standard mastectomy.
Medscape Medical News
EU Panel Likes Lung Cancer Drug and MoreEU Panel Likes Lung Cancer Drug and More
The Committee for Medicinal Products for Human Use recommended for approval multiple oncology drugs this month.
International Approvals
Noninvasive Urine Test Predicts Bladder Cancer RecurrenceNoninvasive Urine Test Predicts Bladder Cancer Recurrence
A new noninvasive test was more predictive of bladder cancer recurrence than standard cytology and cystoscopy.
Medscape Medical News
Discuss Delaying Reconstruction After MastectomyDiscuss Delaying Reconstruction After Mastectomy
Higher risk for serious wound complications, more breast surgeries, and delays in adjuvant therapy follow immediate reconstruction.
Medscape Medical News


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