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PNH Disease Center France
   
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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
Asked and Answered: Vaccines Are Safe
The issue of vaccine safety has been raised so often that doctors are fed up with explaining just how safe they are. But they'll have to do it again.
Here's How Much It Costs to Raise a Child These Days
There's an old saying that if you wait until you can afford children, you'll never start a family. New numbers explain why.
Some Hostess Twinkies recalled for possible health risk
Hostess Brands is voluntarily recalling some of its holiday Twinkies because of possible salmonella contamination.
An Obamacare Repeal Could Affect Your Workday ? and Your Retirement
No one knows what's coming ? but everyone wants to be ready. They just need some facts.
Obamacare Fact Check Shows False Claims
Obamacare is not in a death spiral and isn't about to collapse, no matter what critics say.
Exclusive: Drug Epidemic Will Be Chris Christie's New 'Mission'
Christie will forego the conventional formula of achievements and policy goals to instead detail a plan to curb the nation's drug epidemic.
Top Cancer Doc Makes About-Face on Mammograms
'We're curing people who don't need curing'. It's time to admit that mammograms are not perfect,the American Cancer Society's top doctor says.
Memory Supplement Prevagen a Hoax, FTC Says
The FTC and New York's attorney general charged a company with fraud on Monday for selling a memory supplement based on a glowing jellyfish protein.
Doctor's Anti-Vaccine Rant Fuels Debate ? Again
The Cleveland Clinic is in damage control mode after the director of its Wellness Institute questioned the safety of vaccines in a blog post.
Trump HHS Pick is Friend to Campaign Donors
Rep. Tom Price, tapped a HHS head, has long criticized federal spending as excessive but has kept cash flowing to his biggest donors.
Channel: Medscape Hematology-Oncology Headlines
Surveilling Middle-Risk Prostate Cancer: Cautionary Data Surveilling Middle-Risk Prostate Cancer: Cautionary Data
Active surveillance for the management of intermediate-risk prostate cancer is used at some cancer centers, but new data indicate that its use comes with increased risks for adverse outcomes
Medscape Medical News
Did Cancer Screening Increase Under ACA?Did Cancer Screening Increase Under ACA?
The Affordable Care Act (ACA) eliminated out-of-pocket expenses for cancer screening, but although use of mammography increased, there was no change for colonoscopy.
Medscape Medical News
'Overdiagnosis Exists in Breast Cancer''Overdiagnosis Exists in Breast Cancer'
Another study provides evidence supporting the idea that breast cancer screening results in overdiagnosis of disease, and a new editorial provides historical perspective on how this came about.
Medscape Medical News
Singing Oncologist Cowrites Songs for PatientsSinging Oncologist Cowrites Songs for Patients
Oncologist Steven Eisenberg helps cancer patients cope with the challenges of their illness by singing to them personalized songs about their lives.
Medscape Medical News
Reoperation Rates 3-Fold Higher After DCIS Than IBCReoperation Rates 3-Fold Higher After DCIS Than IBC
Patients undergoing breast-conserving surgery had reoperation rates 3 times higher when when their diagnosis was ductal carcinoma in situ (DCIS) than when it was invasive breast cancer (IBC).
Medscape Medical News
FALCON Breast Cancer Trial: Who's Naive Here?FALCON Breast Cancer Trial: Who's Naive Here?
In the FALCON trial, fulvestrant improved PFS in ER+ metastatic breast cancer patients who were endocrine-therapy naive, but the trial failed to answer key clinical questions, says Dr Lidia Schapira.
Medscape Oncology
Is Radical Surgery Needed in Rectal Cancer for All Patients?Is Radical Surgery Needed in Rectal Cancer for All Patients?
For patients who have a complete response to chemoradiation, a debate is ongoing whether or not radical surgery is needed in all cases.
Medscape Medical News
Top US Cancer Center Cuts 1000 StaffTop US Cancer Center Cuts 1000 Staff
After revenue was about $100 million short of operating expenses in September and October, MD Anderson leadership decided to reduce staff.
Medscape Medical News
Pancreatic Surgery: Robot vs Surgeon, Volume ImportantPancreatic Surgery: Robot vs Surgeon, Volume Important
The risks of minimally invasive pancreatic surgery are increased in low-volume hospitals, and volume may be more important than whether the surgery is open or robotic.
Medscape Medical News
Dramatic Drop in Cancer Deaths, but One Cancer Still UpDramatic Drop in Cancer Deaths, but One Cancer Still Up
The overall rate of death from all cancers combined has been dropping over the past few decades across the United States, but one cancer is still increasing.
Medscape Medical News

 

  
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