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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.


Glossary of
PNH Terms




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
Hepatitis virus found in donated blood
There was controversy yesterday over a study which revealed that thousands of blood donors are infected with a usually harmless liver virus.
Progress on transplantable platelets
Fully-functional human platelets can now be created in a bioreactor developed by experts at Brigham and Women's Hospital, Boston, Massachusetts, USA.
Mystery of health-boosting blood genes
Most of the human population may benefit from gene variations which help replenish healthy red blood cells, researchers reveal today.
Progress on animal blood cell model
Scientists have identified a possible way of examining human blood stem cells in animals, without the need for irradiation.
Blood clotting secrets uncovered
The molecular mechanism of a key reaction that initiates blood clotting has been discovered by American scientists.
Mechanism revealed that turns stem cells into blood
The genetic recipe behind the turning stem cells into red and white cells that make up human blood has been revealed.
DNA key to CLL testing
DNA linked to aging could help doctors determine the prospects with a common form of leukemia, according to British researchers.
No blood clot risk from HPV vaccine
The vaccine used to prevent cervical cancer is not linked to venous thromboembolism, researchers have reported.
UK lags on cancer care
Problems with care and access to treatments may explain major differences in the survival of patients with blood cancer across Europe, according to a major new study.
Partial transplant benefits sickle cell
New findings from a trial of stem-cell transplant for sickle cell disease show that many patients recover well and can safely come off anti-rejection drugs.
Channel: NBC News Health
Soda Loses Fizz: Two-Thirds Avoid Pop
The bubble has burst for soft drinks, with two-thirds of Americans saying they're actively avoiding drinking the beverage.

Money Over Medical: Why We Don't Yet Have an Ebola Vaccine
Ebola may be making headlines, but it's not a big potential source of money for drug companies.

7 Things You're Doing Wrong to Avoid Skin Cancer
Melanoma, the deadliest form of skin cancer, is on the rise. So the U.S. Surgeon General has released a Call to Action to help prevent the disease.
Experimental Malaria Vaccine Protects Babies
An experimental malaria vaccine being developed by one of the world?s biggest drug companies has protected small babies for as long as 18 months.

'Lost a Best Friend': American Dies in Ebola Outbreak
Patrick Sawyer, 40, collapsed July 20 in Lagos after falling noticeably ill. His wife, from Coon Rapids, Minnesota, believes his sister infected him.

Vets to Fired Pot Doc: 'We've Got Your Back'
Backers of fired pot researcher Dr. Sue Sisley argue her dismissal reveals the forces blocking marijuana from reaching the medical mainstream.

Three Myths About the Sun and Sunscreens
Dr. Nancy debunks three myths surrounding sunscreen.

Bars Offer Hangover 'Cure': IV Drip in the Arm
A new kind of ?bar? is cropping up around the nation, touting cures for hangovers delivered not in a cocktail glass but via a needle in the arm.

That Vending Machine Brownie Can Boost Productivity
If you?re stuck working late and vending-machine junk food is your only option for dinner, go ahead ? it could boost your productivity.

New IV Drip Treatment Targets Hangovers

Channel: Medscape Hematology-Oncology Headlines
Researcher Skips Treatment to 'Immortalize' Her Own CancerResearcher Skips Treatment to 'Immortalize' Her Own Cancer
A biomedical researcher, whose highly aggressive cancer has been compared to that of Henrietta Lacks, has taken an unusual step in an effort to 'immortalize' her cancer cells for research.
Medscape Medical News
ALTTO Fallout Focuses Debate on the Meaning of pCRALTTO Fallout Focuses Debate on the Meaning of pCR
The debate about the use of pathologic complete response (pCR) as a surrogate for survival, sparked by the ALTTO results, is gathering momentum.
Medscape Medical News
Obinutuzumab for CLL Approved in EUObinutuzumab for CLL Approved in EU
The new anti-CD20 antibody performed better than its predecessor rituximab in a head-to-head trial, but will it replace the older drug?
International Approvals
Ibrutinib in CLL: Indication Expanded, Benefit Confirmed Ibrutinib in CLL: Indication Expanded, Benefit Confirmed
The FDA has extended the use of the drug to also cover use in patients with chronic lymphocytic leukemia (CLL) with a chromosome 17p deletion.
News Alerts
Why Breast Cancer Patients Should Be Big LosersWhy Breast Cancer Patients Should Be Big Losers
Dr. Lidia Schapira reports on a large meta-analysis confirming that obesity negatively affects risk for mortality in breast cancer patients -- and what both patients and doctors should do about it.
Medscape Oncology
CHMP Gives Nod to New Drugs in Cancer CareCHMP Gives Nod to New Drugs in Cancer Care
Marketing authorization has been granted in Europe for generic versions of busulfan and filgrastim and for expanded use of denosumab.
News Alerts
Whistleblower Case Against Celgene Can Proceed, Says JudgeWhistleblower Case Against Celgene Can Proceed, Says Judge
A former employee alleges that Celgene engaged in unlawful marketing of thalidomide and lenalidomide and downplayed risks before the drugs were approved to treat cancer.
Medscape Medical News
Most People Who Need a Marrow Transplant Will Find a DonorMost People Who Need a Marrow Transplant Will Find a Donor
Most patients who need a bone marrow transplant will find a suitable donor, but the likelihood of finding an optimal donor varies by race and ethnicity.
Medscape Medical News
Drugs to Avoid in Patients on Tyrosine Kinase InhibitorsDrugs to Avoid in Patients on Tyrosine Kinase Inhibitors
Tyrosine kinase inhibitors are now used extensively in oncology, with more than 15 of drugs on the market, but these drugs can have serious interactions with other therapies.
Medscape Medical News
Ibrutinib and Idelalisib Coming to Europe Soon Ibrutinib and Idelalisib Coming to Europe Soon
These 2 novel targeted agents are recommended for approval for chronic lymphocytic leukemia, and also for certain types of lymphoma.
International Approvals


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