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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
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.
Give blood to counteract jet lag?
People who work night shifts might benefit their health by undertaking regular blood donations, scientists say.
Dismay as myeloma drug rejected
A hematologist has expressed dismay at a Scottish decision to reject a powerful new drug for multiple myeloma.
Leukemia link for breast cancer
A hard to treat form of breast cancer has genetic links with leukemia, according to a new study.
Channel: NBC News Health
Gunman Opens Fire, Doctor Shoots Back

'Unexpected': Dentist's Surprise at Teen's 232 Teeth
An Indian teenager suffering from a rare condition had 232 teeth removed by dental surgeons. The boy's father said he had experienced "burning pain".

Husband Awoke From Surgery Without Penis: Lawsuit
"We intend to defend all counts aggressively," spokeswoman for Alabama hospital's parent company says.

New Database Tracks Lou Gehrig's Disease
Researchers have taken a first step towards understanding a terrifying and terrible disease ? Lou Gehrig?s disease

Man Has 170-Pound Tumor Removed After 14 Years
After 14 years, a California man adjusts to life without the 170 pound tumor that nearly crippled him. KGET's Rachelle Murcia reports.

Too Few Kids Get HPV Vaccine, CDC Says
Too few kids are getting HPV vaccines that protect them from cervical cancer and cancers of the throat and mouth, CDC says.
CDC Lifts Limits on One Lab After Anthrax Flub
The CDC re-opened one of the high-level safety labs closed after an incident last month in which live anthrax samples were mistakenly sent out.

CDC Reopens One Closed Lab After Anthrax Flub
The CDC opened one of the high-level safety labs closed after an incident last month in which live anthrax samples were mistakenly sent out.

FDA Approves Abuse-Deterring Painkiller
The Food and Drug Administration has approved a new version of a popular but highly criticized painkiller that is designed to deter abuse.

Why 'Fifty Shades of Grey' Will Be Girls' Night
The books were a mega-hit, but people could read them in private. Will women want to bring a date to a movie featuring lots of sex and bondage?

Channel: Medscape Hematology-Oncology Headlines
What Is Driving Change in Oncology Clinical Practice?What Is Driving Change in Oncology Clinical Practice?
Medical evidence and commitment to delivering high-quality care are the most important drivers, but guidelines, reimbursement, and regulatory changes are also important.
Medscape Medical News
Test Spares Men Unnecessary Biopsies for Prostate CancerTest Spares Men Unnecessary Biopsies for Prostate Cancer
The epigenetic Confirm MDX assay for prostate cancer, with its 90% negative predictive value, can reduce unnecessary biopsies 10-fold, according to results from 2 studies.
Medscape Medical News
Burnout and Unrealistic Views of 'Budding Oncologists'Burnout and Unrealistic Views of 'Budding Oncologists'
Oncology fellows face a high rate of burnout during their training, and they also fail to anticipate the extent of their workload when they enter practice.
Medscape Medical News
New Classification of Gastric Cancer Spurs Targeted Therapy New Classification of Gastric Cancer Spurs Targeted Therapy
A landmark study has identified 4 distinct subtypes, each with its own characteristic and potentially 'druggable' targets.
Medscape Medical News
Sunitinib or Everolimus First-Line for Kidney Cancer? Sunitinib or Everolimus First-Line for Kidney Cancer?
A phase 2 randomized comparator trial has found that first-line everolimus is not as effective as first-line sunitinib, and has a different toxicity profile.
Medscape Medical News
Idelalisib (Zydelig) Approved for CLL and Lymphoma Idelalisib (Zydelig) Approved for CLL and Lymphoma
This oral drug has been generating great excitement among researchers, who welcome it as an alternative to chemotherapy.
FDA Approvals
Pembrolizumab Works in Melanoma After Ipilimumab Pembrolizumab Works in Melanoma After Ipilimumab
Patients with advanced melanoma that had progressed on ipilimumab, for whom there are few treatment options, responded to the new drug.
Medscape Medical News
H pylori Eradication to Prevent Gastric CancerH pylori Eradication to Prevent Gastric Cancer
A meta-analysis seems to find a benefit for H pylori eradication on gastric cancer, but what do the findings mean for clinical practice?
Medscape Nurses
Comprehensive Rehab Programs Beneficial in Advanced CancerComprehensive Rehab Programs Beneficial in Advanced Cancer
A program that combines nutritional counseling, exercise, and symptom control can improve the symptomatic course of advanced cancer.
Medscape Medical News
The Molecular Tumor BoardThe Molecular Tumor Board
Dr. Maurie Markman discusses the potential of 'molecular tumor boards' to interpret the genomic and genetic test results of cancer patients who do not have clear treatment options.
Medscape Oncology


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