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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
U.S. Doctor Dies Near Mount Everest's Summit
It was a deadly weekend on the world's highest mountain.
Blast Rocks Hospital on Anniversary of Thai Coup; 25 Hurt
It was not clear whether the explosion was connected to the anniversary of the 2014 military coup that overthrew a democratically elected government.
Study: ADHD Symptoms Are Going Untreated in Black Youth
Researchers found black youth with ADHD are more likely to go off of their medication and less likely to have adequate follow-up than whites.
Poop in Pools: Outbreaks of Parasite on Rise
There's a nasty poop-borne parasite in public pools.
The House May Need to Vote on Health Care (Again!)
House Republicans passed the American Health Care Act earlier this month, but there's still a chance they might have to vote on it again before the Senate can take it up.
Chris Cornell's Wife Disputes Suicide Ruling
As Vicky Cornell mourns her rocker husband's sudden death, she wonders if substance use could have led to his suicide.
New Ebola Outbreak to Cost $10 Million to Fight, WHO Says
A fresh outbreak of Ebola in the Democratic Republic of Congo will cost $10 million to fight, and it could take months, WHO says.
Obamacare Premiums Are Going Up. Whose Fault Is It?
Health insurance companies are asking for giant premium increases for ACA policies. Whose fault is that?
Nonprofit Groups Battle Sexual Health Stigma in South Asian Community
South Asian-American community groups are increasing access to contraception and teaching workshops to reduce sexual health stigma.
Doctors Find These Habits Help Cancer Patients Live Longer
Cancer survivors who eat fruits and vegetables, avoid meat and exercise live longer than those who don't.
Channel: Medscape Hematology-Oncology Headlines
Talking With Patients About NGS Testing: Marketing vs RealityTalking With Patients About NGS Testing: Marketing vs Reality
Experts on genomic testing in cancer discuss the marketing of NGS tests, and how they talk to their patients in light of the promise of ?precision medicine.?
Medscape Oncology
First Drug for Cachexia -- Cheers, Then RejectionFirst Drug for Cachexia -- Cheers, Then Rejection
When the clinical trial data were first presented at a European meeting, they were welcomed enthusiastically, but they didn't make the cut for approval.
International Approvals
Could Gefitinib Replace Adjuvant Chemo in NSCLC?Could Gefitinib Replace Adjuvant Chemo in NSCLC?
In patients with EGFR mutations, adjuvant targeted therapy with gefitinib gave better results with less toxicity than adjuvant chemotherapy.
Medscape Medical News
5 Big Qs (and As) on Inherited Prostate Cancer Testing5 Big Qs (and As) on Inherited Prostate Cancer Testing
After a 20-year flow of new data on the subject, there is finally a consensus statement about when to do genetic testing for inherited prostate cancer risk.
Medscape Medical News
Large Study Shows Reduced Oral HPV Infections With VaccineLarge Study Shows Reduced Oral HPV Infections With Vaccine
Rates of oral HPV infection were reduced in young adults who had been vaccinated, suggesting protection from oropharyngeal cancer.
Medscape Medical News
Poor Lifestyles Fuel 'Suffering and Death From Cancer'Poor Lifestyles Fuel 'Suffering and Death From Cancer'
Socioeconomic and policy factors that are driving high-risk behaviors need to be addressed, says the American Cancer Society.
Medscape Medical News
Biliary Tract Cancer Data 'Will Change Practice Overnight'Biliary Tract Cancer Data 'Will Change Practice Overnight'
Results from a British study of adjuvant chemotherapy that began 10 years ago could lead to an overnight change in clinical practice, says an expert.
Medscape Medical News
New Photoacoustic Imaging System Future Boon to SurgeryNew Photoacoustic Imaging System Future Boon to Surgery
A new intraoperative margin assessment tool should make certain that margins are negative during surgery, obviating the need for second surgeries.
Medscape Medical News
Technology Will Transform the Oncologist's Day in PracticeTechnology Will Transform the Oncologist's Day in Practice
Technology either already available or in development promises to dramatically alter the oncologist's typical day in clinic by reducing the frustrations of 'scut work.'
Medscape Oncology
Chasing Checkpoints: James Allison in Time Magazine Top 100 Chasing Checkpoints: James Allison in Time Magazine Top 100
James Allison, PhD, whose research opened up the field of checkpoint blockade, has been named by Time magazine as one of the 100 most influential people of 2017.
Medscape Medical News

 

 
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