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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
Diet for healthy blood
The Mediterranean lifestyle may help to keep the blood healthy, according to a new study.
Down's syndrome-leukemia link clarified
Researchers have announced new findings about the link between Down's syndrome and childhood acute lymphoblastic leukemia.
Cancer patients should get anemia treatment - experts
People with cancer who suffer from anemia should be given drugs that boost the level of red blood cells, according to British experts.
Platelet action uncovered
New findings about a key hormone are helping to explain how platelet production is controlled, researchers have reported.
Hope for new blood type test
A new DNA-based testing system can provide rapid and highly accurate details of donated blood, French researchers reported yesterday.
Organic food may protect against lymphoma
Eating organic food may feel healthy - but it does not cut the risk of developing cancer, according to the findings of a major study.
'Game changing' approach to leukemia testing
A new approach to leukemia testing has been described as "game changing" by the molecular pathologist who led the US study.
Limiting transfusions cuts infection
Giving hospital patients red blood cell transfusions only if their hemoglobin level is low can prevent infections, new research shows.
Questionnaire helps young adults with sickle cell
A tool has been developed to help doctors decide when young adults with sickle cell disease can move into adult care.
Blood cells unravelled
Scientists have unveiled new genetic findings about blood cells, aimed at understanding how they develop from stem cells.
Channel: NBC News Health
9 foods to 'spring clean' your diet
Want to wring out your system as part of the annual spring cleaning? Skip the weird (and often dangerous) detox diets or cleanses. You can get rid of toxins and purify your body simply by adding these foods into your everyday eating plan.

Nine Foods to 'Spring Clean' Your Diet

You can get rid of toxins and purify your body simply by adding these foods into your everyday eating plan.

The ultimate pick-me-up: Jenna Wolfe?s 10-minute office workout
Feeling a little stiff and achy from sitting all day? Loosen up those joints and muscles with a quick workout you can do right at the office. 1. Lift your left leg so that you are standing only on your right leg. Hold for 60 seconds without losing your balance. Switch legs.2.

Looking Back at America's Struggle Against AIDS

April 23 marks the 30th anniversary of the announcement that the cause of AIDS had been discovered.

Rare Birth Defects Still Spiking in Washington State
Seven cases of a rare fatal birth defect were reported in a remote region of Washington state in 2013, making it the fourth consecutive year that rates have more than tripled the national average, health officials said Tuesday.

Health Experts Anxious to See FDA Rules on E-Cigarettes
The U.S. Food and Drug Administration is expected to issue its first regulations governing electronic cigarettes by the end of the month, and health experts are anxious about what the rules may look like.

Most Support Birth Control Mandate, Survey Shows
Most Americans ? 69 percent ? support the requirement that health insurance plans pay for birth control, a new survey shows.The 2010 Affordable Care Act requires health insurers to pay for contraception as part of 10 essential benefits, including vaccines and cancer screenings.

How Did He Survive? Teen Stowaway 'Very, Very Lucky'
The 16-year-old boy who stowed away in the landing gear of a 767 flying from California to Hawaii survived with help from an unlikely source: the frigid temperatures that could have killed him.The runaway from Santa Clara, Calif.

5 tips to get started on the 'Drop a Dress Size' plan
The winter months often lead to some extra pounds. Whether you can barely zip up your favorite summer dress or need to let your belt out a notch or two, now is the time to regroup, renew, and refresh your lifestyle to feel and look your best.

What's Wrong With Wyatt? Baby's Disease Baffles Doctors

A 9-month-old baby is baffling doctors with his rare diagnosis -- a condition that prevents him from opening his mouth.

Channel: Medscape Hematology-Oncology Headlines
Radical Surgery for Mesothelioma: Still ControversialRadical Surgery for Mesothelioma: Still Controversial
The role of radical surgery in the treatment of malignant pleural mesothelioma has been the subject of much heated debate in the last few years, and it remains controversial, say experts.
Medscape Medical News
Is Anxiety From a False-Positive Mammogram Small, Transient?Is Anxiety From a False-Positive Mammogram Small, Transient?
A new study indicates that false-positives only increase short-term anxiety, but a critic questions the measurement tools.
Medscape Medical News
First Trial of Targeted MRI vs Standard Prostate BiopsyFirst Trial of Targeted MRI vs Standard Prostate Biopsy
The results, presented at the European Association of Urology Congress, have 'completely radicalized and changed our paradigm,' says researcher.
Medscape Medical News
ASCO Launches New Survivorship GuidelinesASCO Launches New Survivorship Guidelines
ASCO has launched the first 3 guidelines as part of a series that will cover all aspects of cancer survivorship.
Medscape Medical News
Swiss Medical Board: Stop Widespread Mammography ScreeningSwiss Medical Board: Stop Widespread Mammography Screening
An advisory body in Switzerland has proposed that the country end systematic breast cancer screening with mammography.
Medscape Medical News
Not Clear: Best Use of Rituximab in Follicular LymphomaNot Clear: Best Use of Rituximab in Follicular Lymphoma
Watching and waiting is the accepted practice for managing patients with asymptomatic, advanced-stage nonbulky follicular lymphoma. But another strategy is being championed.
Medscape Medical News
Retooling the War on CancerRetooling the War on Cancer
Author and cancer survivor Clifton Leaf talks to Dr. Lidia Schapira about how mismanagement and bureaucracy are crippling efforts to overcome cancer.
Medscape Oncology
Chemotherapy 'Vastly Underutilized' in Bladder CancerChemotherapy 'Vastly Underutilized' in Bladder Cancer
Neoadjuvant use hovers at 4%, whereas adjuvant chemotherapy is increasing in popularity, according to data from the Ontario Cancer Registry.
Medscape Medical News
EU Warning: Herceptin Vials Have Been Tampered WithEU Warning: Herceptin Vials Have Been Tampered With
The European Medicines Agency is warning about a problem with a small number of batches of Herceptin (trastuzumab) for breast cancer.
News Alerts
Oncologist Compensation Increases Slightly, Middle of PackOncologist Compensation Increases Slightly, Middle of Pack
The annual Medscape Physician Compensation report is out once again. And it is a realistic, hype-free portrait of oncologist income.
Medscape Medical News


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