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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
New anti-cancer drug for advanced leukemia
A trial of a potential new drug for relapsed or refractory acute myeloid leukemia is showing promising results, a European conference has heard.
Immunotherapy set for cancer armory
Immunotherapy is set to join the other "therapies" as a standard treatment for cancer, a conference has been hearing
Hope for hemophilia cures
A gene therapy for hemophilia has proved successful in helping men with a severe form of the disease, it has been announced.
Anti-coagulants help donor organs
Blood thinning drugs may help protect organs being used for transplantation, according to a new study.
Hope for new CML treatment
Scientists say they may have discovered a new approach to treating chronic myeloid leukemia, aimed at helping to tackle drug resistance.
Lymphoma therapy blow
Hopes for a new treatment for lymphoma have been dashed by the discovery of serious side-effects in laboratory studies, researchers have reported.
Novel drug target for aggressive leukemia
A novel drug is in development for T-cell acute lymphoblastic leukemia, it has been announced.
New doubt over power line childhood leukemia link
Doubt has been cast over theories that air pollution caused by overhead power lines is linked to the development of childhood leukemia.
Hope for proliferative disease
Researchers have offered new hope for a treatment for myeloproliferative neoplasms.
Genome editing 'cures' hemophilia in mice
A new way to "edit" genomes has enabled mice to be cured of hemophilia, giving hope among researchers looking to cure genetic disease.
Channel: NBC News Health
Hope At Last: Trial Ebola Vaccine Seems to Work
The first test of an Ebola vaccine in people shows it's safe and appears to be working as designed, doctors reported Wednesday.






Film Confronts Huntington's Disease Head-On
Independent Film "The Lion's Mouth Open" takes a look at one woman's decision to find out whether she has Huntington's disease.






GMO Cattle Produce Serum to Fight Hantavirus
Serum from genetically engineered cattle might eventually be used to fight deadly diseases like Ebola and hantavirus, according to a report.






Grieving Family Hears Son's Heart Beat in Another's Chest
Fittingly for a young man described as tender, with a huge heart that was always in the right place, a part of Matthew Heisler lives on.






Calling It Quits: American Smoking Hits 50-Year Low
Just 18 percent of Americans are regular smokers, the lowest level in 50 years.






Half a Million Sign Up for Obamacare in First Week
What a difference a year makes. More than 460,000 people signed up for health insurance on the federal government?s website during the first week.






Family Hears Dead Son's Heart Beat Inside Chest of Organ Recipient
Family of organ donor hears son's heart beating in the chest of the transplant recipient that it saved. KARE's Adrienne Broaddus reports.






Ryan Reynolds, Michael J. Fox Team Up on Parkinson's
Ryan Reynolds and Michael J. Fox sat down with Willie Geist to talk about their mutual quest to find a cure for Parkinson?s.






All Together: U.S. Ebola Survivors Meet on TODAY
Six American Ebola survivors, meeting together for the first time as a group Wednesday on TODAY, opened up about the unusual bond they share.
Should Toddlers Switched at Birth Be Exchanged?
The two children, a boy and a girl, were born on the same day in a Johannesburg hospital but were taken home and raised by the wrong parents.






Channel: Medscape Hematology-Oncology Headlines
Immunotherapy: Extending Its Reach, Predicting ResponsesImmunotherapy: Extending Its Reach, Predicting Responses
Immunotherapy with checkpoint inhibitors has already made an impact on oncology, but how to predict which patients respond remains a big issue.
Medscape Medical News
High Price Tag for Cologuard Confirmed, but Test Is WelcomedHigh Price Tag for Cologuard Confirmed, but Test Is Welcomed
The first stool DNA test for colorectal cancer has its high price tag confirmed, but experts argue that it is worth using if it increases screening rates.
Medscape Medical News
Stark Differences in Cancer Survival Across the GlobeStark Differences in Cancer Survival Across the Globe
An international investigation reveals marked differences in cancer survival between countries that cut across expected discrepancies.
Medscape Medical News
What's Hot at 2014 San Antonio Breast Cancer Symposium? What's Hot at 2014 San Antonio Breast Cancer Symposium?
The largest meeting on breast cancer in the world always has breaking news, and symposium cochairs give a hint of what is to come this year.
Medscape Medical News
Obesity Linked to Half a Million Cancer Cases WorldwideObesity Linked to Half a Million Cancer Cases Worldwide
Excess body weight was associated with almost 500,000 cases of cancer in 2012, with North America shouldering the biggest burden.
Medscape Medical News
JCO Withdraws Editorial on Cetuximab for Metastatic CRCJCO Withdraws Editorial on Cetuximab for Metastatic CRC
The editorial critiqued the negative findings of a major clinical trial and discouraged clinicians from following the trial investigators' conclusion.
Medscape Medical News
Immuno Death Ray to GI CancersImmuno Death Ray to GI Cancers
Can immunotherapy 'clip the force field' of gastrointestinal tumors? Dr John Marshall and experts say yes and will discuss advances during the Ruesch Symposium 2014, December 5, Washington, DC.
Medscape Oncology
ASH 2014: If You're Going to San Francisco?ASH 2014: If You're Going to San Francisco?
Dr Bruce Cheson previews important data being presented at the upcoming ASH 2014 meeting, including studies of CLL, Hodgkin lymphoma, and the role of interim PET scans in large cell lymphoma.
Medscape Oncology
What's Hot at 2014 ASHWhat's Hot at 2014 ASH
Some studies with immediate clinical implications and others that offer hope for the future will be unveiled at the annual meeting of the American Society of Hematology.
Medscape Medical News
Oncology's Unrecognized CrisisOncology's Unrecognized Crisis
Why should 71% of young oncologists in Europe report burnout? Dr Susana Banerjee, author of a much touted European survey, explains her study findings and critical issues that need to be addressed.
Medscape Oncology

 

 
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