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Welcome!

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.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

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
Vigorous exercise can slow Parkinson's
Intense exercise can slow the progression of Parkinson's ? enough so that patients can notice the difference, researchers reported.
New CDC Director questioned about financial conflicts
Dr. Brenda Fitzgerald became director of the Atlanta-based CDC in July, and was required to sell a range of stocks she owned, including beer and soda companies, a major tobacco company, and a number of health care companies.
Why indulging in a 'cheat meal' can help you lose weight
Indulging in that bacon cheeseburger can be healthy ? if you do it right.
1 in 5 kids facing mental health risk in U.S.
American children's mental health is worrying experts, with one in five kids suffering from a diagnosable mental, emotional or behavioral disorder.
Think you have a vitamin D deficiency? Here's how to tell
Everyone says we're not getting enough of it, but what is vitamin D, anyway?
Gadgets and gifts that will take your fitness routine to the next level
Push your favorite gym-goer into high-gear (or get a newbie started on the right foot).
Congress neglects CHIP kids' health plan
Congress has failed to come up with any funding for CHIP, the Children's Health Insurance Program that covers 9 million kids.
Flu season hits early this year
The U.S. may be in for an early and dangerous flu season, with influenza already more widespread than it was this time last year, the CDC says.
How 'intuitive eating' can help you love your body and get healthy
Letting go of the number on the scale helped Michelle Vina-Baltsas improve her blood work and finally make peace with her body.
Do this to make your strength training routine more effective
Making a few tweaks to your strength routine can supercharge your workout ? and your results.
Channel: Medscape Hematology-Oncology Headlines
When to Stop Immunotherapy: First Response? Max Response? Toxicity?When to Stop Immunotherapy: First Response? Max Response? Toxicity?
There is an ongoing debate within the oncology community about when to stop immunotherapies, with treatment response, toxicity, and cost all playing important roles.
Medscape Oncology
Venetoclax and Rituximab: New Standard of Care in CLL?Venetoclax and Rituximab: New Standard of Care in CLL?
The new combination of venetoclax and rituximab was superior to the standard-of-care combination of bendamustine and rituximab in the treatment of relapsed/refractory CLL.
Medscape Medical News
First in 30 Years: Improved Front Line in Hodgkin's LymphomaFirst in 30 Years: Improved Front Line in Hodgkin's Lymphoma
Brentuximab vedotin has already made an impact on the management of relapsed/refractory classical Hodgkin's lymphoma. Now the drug is poised for frontline use.
Medscape Medical News
Immuno/Chemo/Bev Combo 'Promising' in Advanced Lung Cancer Immuno/Chemo/Bev Combo 'Promising' in Advanced Lung Cancer
Immuno/Chemo/Bev Combo 'Promising' in Advanced Lung Cancer
Medscape Medical News
Again, a PARP Inhibitor Has Potential in BRCA+ Breast CancerAgain, a PARP Inhibitor Has Potential in BRCA+ Breast Cancer
A second PARP inhibitor shows promise in germline mutation metastatic breast cancer and is generally well tolerated compared with standard chemotherapy.
Medscape Medical News
CAR T Cells in Advanced R/R Lymphoma: Keeping Patients Alive CAR T Cells in Advanced R/R Lymphoma: Keeping Patients Alive
New longer-term data on CAR T cells in patients with refractory and relapsed (R/R) lymphoma show that responses are durable, with about half of patients alive after a year or more.
Medscape Medical News
Poor Screening Adherence May Worsen Breast Cancer OutcomesPoor Screening Adherence May Worsen Breast Cancer Outcomes
Women who forgo mammography screening may comply less to breast cancer treatment and may have worse outcomes, suggest two European studies, which also found that rates of screening may be falling.
Medscape Medical News
More Younger Women Opting for Bilateral Mastectomy More Younger Women Opting for Bilateral Mastectomy
Rates of bilateral mastectomy for breast cancer are increasing regardless of the success of chemotherapy, particularly in younger and white women and in those with private/managed health insurance.
Medscape Medical News
Blood Transfusions in Leukemia a Deterrent to Hospice Care Blood Transfusions in Leukemia a Deterrent to Hospice Care
Among patients with leukemia, transfusion dependence at end of life can be a deterrent to timely access to hospice care.
Medscape Medical News
Modest Weight Loss Cuts Postmenopausal Breast Cancer RiskModest Weight Loss Cuts Postmenopausal Breast Cancer Risk
Women who lose just 5% of their body weight after the menopause may experience a significant reduction in their risk of developing breast cancer vs women with stable weight, say US researchers.
Medscape Medical News

 

 
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