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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
DWI blood testing sticks in North Texas
Dallasnews.com - Sat May 10, 08:05 am GMT
Blood test results revealed in Dr. Stokes investigation
Woodtv.com - Sat May 3, 12:16 am GMT
A Blood Test To Predict Menopause
Time.com - Thu May 1, 02:00 pm GMT
Study: FDA allowed artificial-blood tests despite risk of death
Www2.arkansasonline.com - Tue Apr 29, 11:24 am GMT
FDA ran risks in artificial-blood tests
Sun-sentinel.com - Tue Apr 29, 07:30 am GMT
Study: FDA allowed risky fake-blood tests
Kansas.com - Tue Apr 29, 06:17 am GMT
Study Says FDA Allowed Risky Blood Tests
Thedenverchannel.com - Mon Apr 28, 06:44 pm GMT
FDA Allowed Blood Testing Despite Risk of Death, Report...
Foxnews.com - Mon Apr 28, 03:17 pm GMT
Two years since law's enactment, mandatory blood tests said to be ...
Mitchellrepublic.com - Thu Apr 24, 10:51 am GMT
Glad blood testing is in place
Mitchellrepublic.com - Thu Apr 24, 06:50 am GMT
Channel: BloodMed.com News
New-found protein aids red blood cells
Scientists are discovering exactly how red blood cells mature and protect themselves from destruction.
Aspirin alternative may be safer for stroke treatment
Researchers in China believe that an alternative to aspirin could work just as well but cause fewer side-effects as an anti-coagulant.
Sickle cell breakthrough
Sickle-shaped cells are not the only cause of the problems encountered by patients with this kind of anemia, researchers have reported.
Sociable children protected from leukemia
Attending a day care centre or playgroups may contribute to reducing a child's chance of developing leukaemia, researchers have reported.
Data 'supports' withdrawal of hemoglobin-based blood substitutes
Patients given hemoglobin-based blood substitutes (HBBSs) are at a raised risk of death and heart attack, suggests new research.
Ongoing research holds promise for lymphomas
US researchers report they are developing a range of effective new treatments for different forms of lymphoma.
New drug hope for follicular lymphoma
A novel drug has raised hopes of preventing relapse in cancer patients with recurrent lymphoma.
Protein discovery in blood clotting
Researchers say they have explained an important step in the formation of clots in blood vessels.
Cause of heparin deaths uncovered
Experts have discovered why contaminated batches of heparin were not discovered during normal safety screening.
Arsenic's cancer paradox solved
Scientists have discovered why arsenic can successfully treat acute promyelocytic leukemia, Nature Cell Biology reports.
Channel: MSNBC.com: Health
Painkillers don't slow dementia, study says
Results from a large government experiment are dimming hopes that two common painkillers can prevent Alzheimer's disease or slow mental decline in older people.
Text nagging prods teens to take meds

Kabrina Moton, 16, from Cincinnati, holds her cell phone that she receives a text-message that reminds her to take her asthma medicine. Need to get on your kid's case about taking medicine? Try speaking, er texting, their lingo: "4gt yr meds?" Cincinnati doctors are experimenting with text messages to tackle a big problem: Tweens and teens too often do a poor job of controlling chronic illnesses like asthma, diabetes or kidney disease. (AP Photo/David Kohl)4gt yr meds? Getting kids to remember their medicine may be a text message away.


Skin cancer can sneak up on the most savvy

EW YORK - MAY 3: A doctor from the American Academy of Dermatology checks Christine Trerotoli for signs of skin cancer May 3, 2004 at Bryant Park in New York City. Could you have skin cancer and not know it? These women did. Reading this could save your skin, even your life.


5 more die in China from child virus
Five more children have died of hand, foot and mouth disease in China, bringing the death toll to 39 since late March, the official Xinhua News Agency said Monday.
Number of disabled vets on the rise

** FILE ** In this Nov. 8, 2007 file photo, Army. Sgt. Brandon Adam, Sandpoint, Idaho, who lost both his legs while serving in Baghdad in May 2007, pauses from exercises while waiting for President Bush to visit the physical therapy lab for wounded soldiers at the Center For The Intrepid at the Brooke Army Medical Center in San Antonio. (AP Photo/Gerald Herbert, File)Increasing numbers of U.S. troops have left the military with damaged bodies and minds, an ever-larger pool of disabled veterans that will cost the nation billions for decades to come ? even as the total population of America?s vets shrinks.


Newsweek: The quest to build the perfect bra
It might sound simple, but building the perfect bra is a substantial engineering and biomechanical challenge?a U.K. university offers a Ph.D. in Intimate Apparel, and forward-thinking designers have developed a breast-cancer-detecting "smart bra."
Emily, Jacob most popular baby names
Emily again topped the list of most popular baby girl names last year, registering as No. 1 for the 12th straight time. Jacob led among names for boys for the ninth year in a row.
Oh, baby: The year?s most popular names

Did your favorite moniker make the cut?


Families make case for vaccine link to autism
Families claiming that a mercury-based preservative in vaccines triggers autism will challenge mainstream medicine Monday as they take their case to a federal court.
Moving toward more lifelike artificial limbs

Interactive: The unusual beak of the Humboldt squid, a robot-steering "robo-moth," and a newly discovered phenomenon related to vibrating cell phones all hint at what might lie on the horizon for better prosthetic limbs.Lifelike replacement limbs of the future could be formed from body-friendly composites, boast strong and flexible materials that generate electricity needed to transmit signals and possibly even integrate directly with neural implants to produce more natural movements.
Channel: Medscape Hematology-Oncology Headlines
The Medscape Hematology-Oncology RSS Feed Has Moved
The Medscape Hematology-Oncology RSS feed has moved to a new location. Please update your RSS bookmark to: http://www.medscape.com/cx/rssfeeds/2678.xml

 

  
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