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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
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
Contractors Allowed to Fumble Obamacare Website, GAO Says
A rushed HHS team failed to plan properly or watch over contractors hired to build the online health insurance exchange, a new report finds.






Ebola Outbreak Puts US Health Workers on High Alert
Deadly Ebola outbreak in Africa has health care workers on alert for viruses that may travel from other countries. NBC News' Erica Edwards reports.






They're Out: Peace Corps Pulls Volunteers Over Ebola
The Peace Corps said it was temporarily removing its 340 volunteers from Liberia, Sierra Leone and Guinea, the hardest-hit West African countries.






Not Just Ebola: What Other Diseases Could Threaten Americans?
A possible Ebola scare briefly closed a Charlotte area emergency room, but health workers have a long list of infections to watch for.






Chikungunya Cases Rise in New York Area
Cases of chikungunya virus spiked higher in New York and New Jersey in the past week, according to new federal data.






Ebola Scare Briefly Closes Charlotte ER
A possible Ebola scare briefly closed a Charlotte area emergency room -- an incident that may be repeated across the country as Ebola fears heighten.






Mom Battled Cancer While Baby Waited For a New Heart
Riki Graves and her infant daughter Juliana fought dual medical battles and won.






The 'Fattest' Meal of 2014 Is...
If you're watching your waistline, avoid ordering anything with "monster," "bottomless" or "big" in its name.






Plastic Doc's 'Muffin Top' Ad Gets Graffiti Makeover
A billboard advertising a plastic surgeon?s services got its own facelift after it was vandalized by someone hitting back at its message.






American Stranded by Ebola Crisis Dies in Liberia
The 24-year-old Maryland man, who has tested negative for Ebola, is not being allowed to leave the West African country for medical treatment.
Channel: Medscape Hematology-Oncology Headlines
Musculoskeletal Pain on Stopping Imatinib: Should We Worry?Musculoskeletal Pain on Stopping Imatinib: Should We Worry?
A first report on a withdrawal syndrome documents patients with chronic myelogenous leukemia with musculoskeletal pain after imatinib withdrawal.
Medscape Medical News
Childhood Cancer Survivors Cut Risk With Healthy LifestyleChildhood Cancer Survivors Cut Risk With Healthy Lifestyle
Poor health habits more than double the risk for metabolic syndrome in childhood cancer survivors.
Medscape Medical News
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

 

 
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