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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

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: Medscape Hematology-Oncology Headlines
Exercise Preserves CV Function in Breast Cancer PatientsExercise Preserves CV Function in Breast Cancer Patients
A structured exercise program during treatment helps preserve cardiovascular function in breast cancer patients at both 6 and 12 months compared with standard care.
Medscape Medical News
Atezolizumab Now Also Approved for Front-Line NSCLCAtezolizumab Now Also Approved for Front-Line NSCLC
The immunotherapy has received FDA approval for an expanded indication for use in combination in nonsmall cell lung cancer.
News Alerts
'It's Going to Be a Useful Agent': Oxybutynin for Hot Flashes'It's Going to Be a Useful Agent': Oxybutynin for Hot Flashes
A urinary incontinence drug is surprisingly effective in the treatment of hot flashes for both women with a history of breast cancer and those with menopausal symptoms but who do not have cancer.
Medscape Medical News
Medical Specialties Match Hits Another New High This YearMedical Specialties Match Hits Another New High This Year
The 2018 medical specialties match set record highs in number of applicants, programs, positions, and positions filled for 2019.
Medscape Medical News
Free Beer, Wine After Alcohol Warning at Cancer MeetingFree Beer, Wine After Alcohol Warning at Cancer Meeting
On opening night, an epidemiologist told meeting attendees that any alcohol intake was associated with an increased breast cancer risk. The next night, the organizers provided free beer and wine to attendees.
Medscape Medical News
Major Trial: Partial Breast Radiation Good for Early Breast CancerMajor Trial: Partial Breast Radiation Good for Early Breast Cancer
Partial breast irradiation was almost equivalant to whole-breast irradiation for disease control and can be considered a valid treatment option for women with early-stage breast cancer.
Medscape Medical News
Canada Says Talc May be 'Harmful to Human Health? Canada Says Talc May be 'Harmful to Human Health?
The government of Canada is considering restricting the use of talc, as inhalation and use in the female genital area may be ?harmful to health.? The move comes amid great controversy.
Medscape Medical News
Uterine Cancer Incidence and Deaths on the Rise in USUterine Cancer Incidence and Deaths on the Rise in US
Black women in particular need to be more aware of the symptoms of uterine cancer to stem the rise in the incidence and mortality rates of uterine cancer in the US, warn CDC experts.
Medscape Medical News
Radiation Oncologist Charged with Gross Negligence, IncompetenceRadiation Oncologist Charged with Gross Negligence, Incompetence
The former CEO of the now-defunct private care center CCS Oncology is charged with gross negligence that allegedly resulted in six patient deaths.
Medscape Medical News
Go Low With Tamoxifen for DCISGo Low With Tamoxifen for DCIS
In a potentially practice-changing result, use of a 5-mg daily dose of tamoxifen for patients with ductal carcinoma in situ (DCIS) prevented new and recurrent breast cancer events in comparison with placebo.
Medscape Medical News


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