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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
Gene therapy for severe immune deficiency
Gene therapy may be more effective than stem cell transplant for X-linked severe combined immunodeficiency disorder, new research indicates.
Blood-forming cell insights
Scientists have reported new discoveries about the creation of hematopoietic stem cells.
New assay could determine lymphomas cheaply
A new procedure could help doctors to determine the different subtypes of lymphoma quickly and cost effectively.
Hope to boost immunotherapy
A drug developed in Southampton, UK, could dramatically improve the success of the new immunotherapy treatments used to treat blood cancers.
Allergy transmitted via donated blood
A new case study suggests that food allergies can be "caught" via blood transfusions.
Insight into anti-cancer drug role
Scientists have made discoveries about vital proteins that could help improve the safety of cancer treatments.
Marker may predict leukemia treatment outcome
A newly-identified biological marker may help predict which patients with chronic myelomonocytic leukemia will respond well to treatment, according to a new study.
Drug hope for rare leukemia
A new form of treatment is being developed to tackle a rare type of acute leukemia, predominantly affecting children.
Medication warning for heart attack survivors
Heart attack patients who are on anti-blood clotting drugs should not be given nonsteroidal anti-inflammatory drugs, researchers have warned.
Key blood cell enzyme discovered
An enzyme in hematopoietic stem cells is central to their healthy periods of inactivity, researchers have reported.
Channel: NBC News Health
Hawaii Passes Bill to Raise Smoking Age From 18 to 21
The bill would prevent adolescents from smoking, buying or possessing both traditional and electronic cigarettes.

Urgent Action Needed for Indiana HIV Outbreak: CDC
Federal officials are asking communities around the country to look for drug-abuse-fueled outbreaks of the AIDS virus.

Minnesota Declares Bird Flu Emergency
Minnesota's declared a state of emergency because of bird flu, which has struck more than 40 poultry farms in the state.

More Bad News for Malaria Vaccine
An experimental malaria vaccine only protects about a third of children from malaria, but it could still save millions of lives, researchers say.

Nurse Springs Into Action As Mystery Illness Diverts Plane
A 25-year-old nurse found herself in the middle of a medical drama in the air when passengers began to fall ill on board a SkyWest Airlines flight.

Face-Transplant Patient: 'Now I Accept What I Am'
Jerome Hamon had suffered from a rare disease known as neurofibromatosis.

Cobie Smulders Reveals Cancer Scare
Cobie Smulders' fictional fights have paled in comparison to the one the actress says she endured in real life.

Is Dirty Air Damaging the Brains of Some City Dwellers?
City air pollution could hurt your brain, Harvard researchers suggested Thursday.

Americans Are Drinking More ? A Lot More
Heavy drinking is on the rise in many parts of the U.S. - up more than 17 percent since 2005, researchers say. And rates are rising faster for women.

Dr. Oz to Critics: 'It's Not a Medical Show'
The Dr. Oz Show is actually "not a medical show" but will no longer use words like "miracle," Dr. Mehmet Oz told NBC News in an exclusive interview.

Channel: Medscape Hematology-Oncology Headlines
Mylan Issues Nationwide Recall of Gemcitabine, Other DrugsMylan Issues Nationwide Recall of Gemcitabine, Other Drugs
Gemcitabine, carboplatin, methotrexate, and cytarabine lots are recalled in the US due to the presence of visible foreign particulate matter.
News Alerts
'Someone to Oversee How Things Move Around Here''Someone to Oversee How Things Move Around Here'
Amid the chaos of a busy hospital, sometimes a few small extra steps can go a very long way.
Medscape Oncology
New Optical Device to Diagnose Basal Cell CarcinomaNew Optical Device to Diagnose Basal Cell Carcinoma
A new optical technology could allow for noninvasive, painless, and rapid diagnosis of basal cell carcinoma in the clinic.
Medscape Medical News
'Unprecedented' Disease Control in Mesothelioma Trial'Unprecedented' Disease Control in Mesothelioma Trial
The immunotherapy pembrolizumab looked very promising for the treatment of this rare form of lung cancer in an early-stage trial.
Medscape Medical News
Europe OKs First PD Inhibitor, NivolumabEurope OKs First PD Inhibitor, Nivolumab
Nivolumab has been recommended for approval for first-line use in metastatic melanoma in the European Union.
International Approvals
Walking Improves Mood, Boosts Energy in Cancer SurvivorsWalking Improves Mood, Boosts Energy in Cancer Survivors
New studies admonish cancer survivors to keep moving, as they show that moderate physical exercise improves mood, reduces fatigue, and reduces the adverse effects of chemotherapy.
Medscape Medical News
Creator of Cancer-Cure Diet Faked Her CancerCreator of Cancer-Cure Diet Faked Her Cancer
Highly successful wellness advocate Belle Gibson claimed to have healed her brain cancer with diet and natural therapies.
Medscape Medical News
Mammography Effective in Older Women (>75 years)Mammography Effective in Older Women (>75 years)
Screening mammography in women 75 years of age and older is effective and should be considered despite USPSTF recommendations against it, according to a new study.
Medscape Medical News
Can CT Alone Cure Early-Stage Hodgkin's Lymphoma?Can CT Alone Cure Early-Stage Hodgkin's Lymphoma?
Most patients with early-stage Hodgkin's lymphoma will be cured with the current standard of care. However, studies such as RAPID may indicate to some that many patients may be cured with chemotherapy alone.
Medscape Medical News
Is Biomarker-Guided Treatment Coming to Prostate Cancer?Is Biomarker-Guided Treatment Coming to Prostate Cancer?
The PARP inhibitor olaparib was active against prostate cancer in a clinical trial; a genetic panel appears to predict response.
Medscape Medical News


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