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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

Channel: News4Sites - Hematology
Blood Testing, Mosquito Style
Sciencedaily.com - Sat Apr 25, 07:30 pm GMT
Defense says new blood test clears Texas man
Ksla.com - Sat Apr 25, 06:15 pm GMT
Health Tip: Blood Tests During Pregnancy
Wave3.com - Thu Apr 23, 02:12 pm GMT
Blood test 'would've saved Bethany's life'
Metro.co.uk - Wed Apr 22, 02:19 pm GMT
Urology clinic jammed with patients seeking blood tests
Siouxcityjournal.com - Fri Apr 17, 07:20 pm GMT
Businessman Exposed Problems With Quest Subsidiary's Blood Test Kits; Led to $302 Million Settlement
Biz.yahoo.com - Wed Apr 15, 06:20 pm GMT
Sun Sentinel Watch: Insurer's mistake results in big bill for blood tests
Sun-sentinel.com - Tue Apr 14, 06:57 pm GMT
Blood Tests Reveal Tobacco Smoke Residues In Non-smoking New Yorkers
Sciencedaily.com - Thu Apr 9, 06:58 pm GMT
Farrah Fawcett suffering from Hematoma; Wants fans to hold on to hope
Ksla.com - Mon Apr 6, 06:57 pm GMT
Lawyers challenge DWI blood testing
Statesman.com - Sun Apr 5, 04:59 pm GMT
Channel: BloodMed.com News
Antibody clue to HIV vaccine success
Scientists have revealed a reason why the HIV vaccine has been less successful than expected.
Hormone cuts post-op transfusion
Researchers say they have found a way of reducing the need for blood transfusions during and after operations.
Drugs to prevent chemo nerve damage
Bone marrow transplantation after chemotherapy could be made more successful with the use of nerve-protecting agents, scientists have found.
Young people's cancer survival rates vary
Survival rates for teenagers and young adults with cancer vary hugely, depending on the type of disease they have, a study has revealed.
Myeloma trials launched
Swedish researchers say they are about to begin testing a new antibody treatment for multiple myeloma.
AML genes found
Scientists have successfully mapped most of the genetic mutations that lie behind acute myeloid leukemia, it has been announced.
Readmissions high post-stem cell transplant
Most children who have received a stem cell transplant need to be readmitted to hospital within six months, researchers have warned.
Rituximab success secrets unveiled
Scientists have discovered why the drug rituximab is so effective at killing cancerous B cells - and the finding could help with the creation of a new generation of cancer drugs.
Leukemia treatment cost too high
The cost of chronic myeloid leukemia medicine is becoming prohibitively expensive in the USA and could lead to patients being untreated or under-treated, senior doctors have warned.
Blood stem cells adapt to infection
Blood stem cells can make large amounts of white blood cells in response to an immune system emergency, according to a mew study.
Channel: feeds/health+feeds/healthvideo
Student: 'We're graduating a premier group of new doctors'
    


'Why would we wait?': 3 sisters face Jolie's cancer dilemma
Actress Angelina Jolie?s revelation this week that she?d had both breasts removed to lower her elevated risk of cancer came as a bombshell to many -- but not to three sisters from Berkeley Heights, N.J.The women -- Cathy Balsamo, Cindy Lepore and Patti Broccoli -- have spent most of the past year grappling with the very dilemma that Jolie faced: What to do when a genetic mutation means you?ve got ...
    


New IVF method uses time-lapse snapshots to boost live births
LONDON -- British fertility experts have devised a new IVF technique that takes thousands of snapshots of a developing embryo that they say can help doctors pick those most likely to implant successfully and develop into healthy babies.At a briefing in London before publishing their results, the researchers said they are already using the technique to select "low risk" embryos that are the le...
    


New IVF technology offers dramatic results
    


Medical research impacted by continuing sequester
    


Can genetic testing help women prevent a breast cancer diagnosis?
    


Flesh-eating bacteria victim gets new bionic hands
    


Calorie-cutting condiments help trim weight
    


How to look younger without plastic surgery
    


4 new cases of deadly Corona virus found in Saudi Arabia
    
Channel: Medscape Hematology-Oncology Headlines
Angelina Jolie and the Power of the Informed DecisionAngelina Jolie and the Power of the Informed Decision
Dr. Kathy Miller comments on the importance of genetic testing in women at high risk for breast cancer so that they can make personal, informed decisions about their care, as Angelina Jolie has done.
Medscape Oncology
Another New Immune Therapy Effective in Multiple CancersAnother New Immune Therapy Effective in Multiple Cancers
Immune checkpoint blockade is one of the hottest treatment concepts in cancer, and first-ever data on a new agent have been unveiled.
Medscape Medical News
Bankruptcy Rate Doubles With Cancer DiagnosisBankruptcy Rate Doubles With Cancer Diagnosis
The study compared adults with and without cancer over a 15-year period.
Medscape Medical News
ASCO Issues Update on VTE in Cancer: Tell Patients of Risk ASCO Issues Update on VTE in Cancer: Tell Patients of Risk
An update to clinical practice guidelines for the prevention and treatment of venous thromboembolism (VTE) in cancer patients emphasizes communication.
Medscape Medical News
Chinese vs US Docs: Comparing Burnout and LifestyleChinese vs US Docs: Comparing Burnout and Lifestyle
Chinese and US physicians were asked the same questions in a survey about lifestyle and burnout. The differences are significant.
Medscape Internal Medicine
Xofigo Approved for Prostate Cancer With Bone MetsXofigo Approved for Prostate Cancer With Bone Mets
A novel radiopharmaceutical that emits alpha radiation improves survival in men with castration-resistant prostate cancer that has metastasized to bone.
FDA Approvals
The 2013 Guide to Chicago, the Universe, and BeyondThe 2013 Guide to Chicago, the Universe, and Beyond
Are you heading to Chicago? Take along this guide to the best restaurants, sights, and evening entertainment.
Medscape Oncology
FDA Approves Companion Genetic Diagnostic Test for TarcevaFDA Approves Companion Genetic Diagnostic Test for Tarceva
The FDA has approved the first companion diagnostic test that can detect EGFR mutations in non-small cell lung cancer.
FDA Approvals
What's Harder to Run: Small Hospital or California?What's Harder to Run: Small Hospital or California?
Dr. Roy Poses discusses hospital executive compensation using an example where the CEO received $800,000 while profits plummeted.
Medscape Internal Medicine
Which Health Apps Are Accurate and Safe?Which Health Apps Are Accurate and Safe?
With thousands of health apps available, a huge project is under way to enlist doctors to evaluate the apps in their specialty. Doctors will soon be able to choose apps with confidence.
Medscape Business of Medicine

 

  
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