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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
Mental trauma of embolism survivors
Many young patients who experience life-threatening blood clots go on to need treatment with psychiatric drugs, a conference heard yesterday.
Abdominal blood clots signal cancer risk
People who develop blood clots in an abdominal vein may well be suffering from undiagnosed cancer, doctors have warned.
Cold homes aggravate sickle cell problems
Health services should find ways of ensuring patients with sickle cell disease live in warm homes, researchers have found.
Call for blood donors
The world needs to step up efforts to recruit voluntary blood donors to help tackle problems such as maternal deaths, according to health officials.
Blood link to brain health
Blood type may be a key clue to brain health, British researchers have found.
Drug may treat acute myeloid leukemia - conference
A new kinase inhibitor may have the ability to treat acute myeloid leukemia, a major conference has heard.
Follow-up scans aid lymphoma care
Positron emission tomography and computed tomography could potentially provide effective follow-up treatment for people who have been treated for aggressive non-Hodgkin lymphoma , according to a new US study.
Rabbit killer may help humans
A virus that kills rabbits could help save the lives of humans with blood cancers, researchers have revealed.
Call to cut pregnancy transfusion risk
Pregnant women may sometimes need blood transfusions - and new guidelines set out how British doctors are expected to reduce the risks linked to these.
Paternal age linked to blood cancer risk
Children born to fathers over the age of 35 face an increased risk of developing blood cancer, according to a major new study.
Channel: NBC News Health
California Senate Passes Tough Vaccine Law
California's set to go from being one of the most liberal states when it comes to vaccines, to being among the strictest.

Sugary Drinks May Kill 184,000 Yearly, Says Study
A new report says sugar-sweetened beverages like sodas and energy drinks may be linked to 184,000 deaths around the globe.

Could Too Much Citrus Cause Skin Cancer?
People who eat or drink large amounts of citrus may be raising their risk of the most deadly form of skin cancer, researchers found.

USDA Proposes Healthier Food for Daycares
More vegetables, less sugar and no food fried on site: the USDA is proposing new rules for food at daycare centers.

Medical Expert Critical of 'Belly Button Challenge'
A new viral fad promotes unhealthy body image, according to a medical expert. KARE's Renee Tessman reports.

Anti-Vaccine Doctor Dead in Apparent Suicide: Officials
Anti-vaccine doctor Jeff Bradstreet was found dead in an apparent suicide in North Carolina, officials said.

A 10-Year-Old's Journey From Liam to Lia
Lia Hegarty, a 10-year-old transgender girl, loves theater and wants to be a zoologist. Her mother shares the remarkable story of her daughter's transition.

Same-Sex Marriage Can Be Good for Kids: Pediatricians
Same-sex marriage can be good for kids, pediatricians say.

Bioethicist: Obamacare is Here to Stay. Now Let's Fix It.
Republicans should give up on attacking Obamacare and help fix it.

California Assembly Votes to End Most Vaccine Exemptions
California lawmakers voted on Thursday to substantially limit vaccine exemptions for school children.

Channel: Medscape Hematology-Oncology Headlines
Docetaxel's Up-front Role in Prostate CancerDocetaxel's Up-front Role in Prostate Cancer
Dr David Graham discusses the most clinically relevant research abstract on prostate cancer as presented at ASCO 2015.
Medscape Oncology
IPI Ousted as First-Line Immunotherapy in Melanoma?IPI Ousted as First-Line Immunotherapy in Melanoma?
Dr Michael Atkins highlights the top melanoma findings from ASCO 2015, including impressive results for nivolumab, combination immunotherapies, and new strategies to target BRAF-mutant disease.
Medscape Oncology
Adding Bevacizumab for Advanced Endometrial CancerAdding Bevacizumab for Advanced Endometrial Cancer
Dr Maurie Markman discusses the most clinically relevant research abstract on the gynecologic cancers as presented at ASCO 2015.
Medscape Oncology
EU Recommends Approval of Neoadjuvant Pertuzumab RegimenEU Recommends Approval of Neoadjuvant Pertuzumab Regimen
CHMP has cleared the way for approval of pertuzumab combined with traztuzumab and other agents in the neoadjuvant setting for women with early HER2-positive breast cancer.
International Approvals
EMA Panel Likes Multiple Myeloma and Skin Cancer DrugsEMA Panel Likes Multiple Myeloma and Skin Cancer Drugs
Two Novartis agents got positive reviews from European authorities.
News Alerts
Active Surveillance May Be Safe After Prostate Tumor UpgradeActive Surveillance May Be Safe After Prostate Tumor Upgrade
Most men with lower-risk prostate cancer on active surveillance who had a tumor upgrade had no further upgrades, and there were no adverse outcomes if they waited for surgery.
Medscape Medical News
Practice Trends for Community OncologistsPractice Trends for Community Oncologists
How are community oncology practices responding to financial and staffing pressures?
Medscape Oncology
To Recur, To Sleep: There's a Rub for Cancer SurvivorsTo Recur, To Sleep: There's a Rub for Cancer Survivors
Cancer survivors are at high risk for psychological distress, and fear of a disease recurrence can affect the quality of their sleep.
Medscape Medical News
UK Reform Empowers PCPs to Improve Cancer DiagnosesUK Reform Empowers PCPs to Improve Cancer Diagnoses
Guidance on symptom-led cancer diagnosis in primary care and early referral could help curb the thousands of excess cancer deaths in the UK every year, claims health watchdog.
Medscape Medical News
Payment Reform: Will Gain Follow Pain?Payment Reform: Will Gain Follow Pain?
No doubt payment reform is painful, but is there an emerging payment model that provides a gain for oncologists? A panel of experts sorts out the options as part of a special session at ASCO 2015.
Medscape Oncology


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