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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
Science-backed reasons to have a pint on St. Patrick's Day
A pint of beer a day may come with a host of health benefits.
Stabbed, punched, bitten: Violence against health care workers common
Serious workplace violence is on average four times more common in health care than in other private industries.
The strategy that helped this couple stop arguing
The idea is to talk about your feelings and needs without making judgments so you can really be heard.
Making peace with the idea of 'ideal weight'
I now know that I don't need to reach that magic BMI number to achieve real health improvements.
I said 'no' to unpaid emotional labor by saying goodbye to this word
Doing the lion's share of unpaid work at home? One way is to change perception is to change our language.
CDC strengthens yellow fever travel warning
Four travelers have died from the virus. Even areas near big cities are affected.
Sexual orientation top risk for suicidal thoughts in college freshmen, study finds
Sexual minorities, such as lesbian, gay, bisexual and transgender students were at four-to-eight-fold higher risk than others for suicidal thoughts and behaviors.
Early humans arose from the rubble of chaos
Environment changes transformed early humans, who learned how to use lighter tools, hunt new kinds of animals and communicate with other groups
Common STD may double ovarian cancer risk
This common STD can also cause infertility and often goes undetected. Can treating it quickly help protect women against later disease?
How did Stephen Hawking live so long with ALS?
Fame and fortune didn't hurt, doctors say
Channel: Medscape Hematology-Oncology Headlines
Chipping Away at Chemotherapy-Induced Cardiotoxicity Chipping Away at Chemotherapy-Induced Cardiotoxicity
Despite failing to hit their primary endpoints, two trials show cardioprotective benefits with two common heart drugs in patients with cancer. The question is how to get everyone on board.
Medscape Medical News
Is Genotype Screening Needed Before Fluoropyrimidines?Is Genotype Screening Needed Before Fluoropyrimidines?
Dr David Kerr on how the recent case for DPYD screening may be on (and off) mark in addressing chemotherapy toxicity.
Medscape Oncology
Gynecologic Cancer Found During Hysterectomy and MyomectomyGynecologic Cancer Found During Hysterectomy and Myomectomy
New analysis provides more precise estimate of occult gynecologic cancers and hints that power morcellation may have potential utility in select patients.
Medscape Medical News
Postop Hypothyroidism Ups Risk for Fistula After LaryngectomyPostop Hypothyroidism Ups Risk for Fistula After Laryngectomy
For patients with cancer undergoing salvage laryngectomy, postoperative hypothyroidism is an independent predictor of wound complications, including fistula.
Medscape Medical News
Colonoscopy Significantly Reduces CRC DeathsColonoscopy Significantly Reduces CRC Deaths
At last, a large case-control study shows a significant reduction of 61% in colorectal cancer (CRC) mortality, but whether this is the best test for screening is unclear.
Medscape Medical News
New Approach to Treating GvHD After Stem Cell Transplant New Approach to Treating GvHD After Stem Cell Transplant
Decidua stromal cells from placentas of healthy mothers show promise in treating severe acute GvHD in patients after hematopoietic stem cell transplantation.
Medscape Medical News
Many Breast Cancer Patients Not Receiving Genetic EvaluationMany Breast Cancer Patients Not Receiving Genetic Evaluation
Many breast cancer patients who may benefit from a genetic evaluation are not receiving testing or counseling.
Medscape Medical News
HIFU Doc Arrested Again, This Time for FraudHIFU Doc Arrested Again, This Time for Fraud
This year, Ronald Wheeler, MD, is accused of scheming to defraud a man out of nearly $50,000 for a prostate cancer treatment. The man did not have prostate cancer, said another urologist.
Medscape Medical News
President's Cancer Panel -- Urgent Action on Drug PricesPresident's Cancer Panel -- Urgent Action on Drug Prices
The new report from the President's Cancer Panel calls for urgent action in addressing drug costs and offers six key recommendations for doing so.
Medscape Medical News
A Moment to Reflect on Communicating Bad News to PatientsA Moment to Reflect on Communicating Bad News to Patients
Dr David J. Kerr discusses the difficult task of delivering bad news to patients--and their often paradoxical response--by sharing one of his favorite poems by Raymond Carver
Medscape Oncology


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