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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
Breast cancer drug effective against AML
A new breast cancer drug that blocks a specific enzyme is also effective against a common type of leukemia, a new Austrian study has found.
Advances in killing chemo-resistant ALL cells
Scientists have reported finding a new way to kill chemotherapy-resistant leukemia cells.
Belgian hope for HIV treatment
A treatment which stops HIV from replicating has shown promise in the laboratory, Belgian researchers have reported.
Zebrafish vital to blood research
Research on zebrafish is extremely helpful when investigating human blood disorders, scientists from Boston, USA, have explained.
Lymphoma gene studied in Scotland
The role of a common cancer-associated gene in the development of lymphoma has been identified by British scientists.
Mitoxantrone link to leukaemia highlighted
New research has confirmed a link between a drug prescribed to people with certain types of multiple sclerosis and an increased risk of developing acute myeloid leukaemia.
Price of blood falls
The price of blood is at its lowest for ten years in the UK because of reduced demand, officials have revealed.
Progress on multiple myeloma research
A new animal model of multiple myeloma will allow improved opportunities for research into this complex disease, it has been announced.
Thrombosis risk increases in unfit women
Women with poor physical fitness levels are more at risk of developing thrombosis than woman who are fitter, according to a new study.
Gene variant for acute leukemia complication
A rare genetic variation can trigger pancreatitis in patients with acute lymphoblastic leukemia when they take a specific chemotherapy drug, researchers have reported.
Channel: NBC News Health
Top Doctors Seek to Reassure Congress on Zika Funding
Federal health agencies are not trying to sneak extra money out of Congress as part of their Zika funding request, a top health official said Tuesday.
Marijuana That Looks Like Candy Is Sending Kids to ER
"Edibles" containing marijuana are spreading everywhere, and kids are getting hurt from California to New York.
NBC and the CDC Host Healthy and Safe Swimming Week Twitter Chat
Kick off 'Healthy and Safe Swimming Week' with the highlights from the co-hosted NBC and the CDC Twitter chat.
Can Bug Spray Alone Stop Zika?
Zika infected mosquitos are expected to hit the United States soon. Will your insect repellent be enough to protect you? NBC's Erika Edwards re
Just 15 Percent of Americans Smoke, CDC Finds
The nation seems to be kicking its smoking habit faster than ever before.
Gas-Filled Balloon May Offer New Weight-Loss Option
Little balloons that are swallowed and then filled with gas can help patients lose weight, researchers said Tuesday.
Average Family Healthcare Costs Have Tripled Since 2001
The costs of providing health care to an average American family surpassed $25,000 for the first time in 2016 ? even as the rate of health cost increa
Surgery Can Treat Diabetes, Groups Agree
Diabetes groups endorsed weight loss surgery as a good way to treat type-2 diabetes.
'Natural' Bug Repellents Don't Last: Report
Natural may sound better, but when it comes to mosquito repellents, what you really want are some good chemicals, Consumer Reports finds.
'Cry It Out' Sleep Method Doesn't Harm Babies: Study
Infants left to cry themselves to sleep will not suffer any emotional, behavioral or parental attachment problems, a new study suggests.
Channel: Medscape Hematology-Oncology Headlines
Breast Cancer: Big Questions Answered?Breast Cancer: Big Questions Answered?
Dr Kathy Miller previews the top ASCO 2016 breast cancer studies, which may provide definitive answers about anthracyclines in HER2-negative BC and optimal duration for adjuvant aromatase inhibitors.
Medscape Oncology
Is Colorectal Cancer on the Run?Is Colorectal Cancer on the Run?
The US incidence of CRC has declined by 40% since 1975. Contributory factors include screening, better treatment, and possibly use of aspirin and changes in gut microbiome reports Dr David Kerr.
Medscape Oncology
HER2+ Colorectal Cancer: Slicing the Pie Into Curable PortionsHER2+ Colorectal Cancer: Slicing the Pie Into Curable Portions
Dr John Marshall views a study of dual targeting in HER2+ CRC as an argument for combining broad molecular testing and precision medicine to slice the cancer pie into curable portions.
Medscape Oncology
High-Risk PCa: Start With Radiation, ADT?High-Risk PCa: Start With Radiation, ADT?
Surgery should not be the first approach in men with high-risk prostate cancer, a new study suggests, as radiation and androgen deprivation therapy probably will still be needed down the line.
Medscape Urology
Bread Comas and Other Not-to-Miss Chicago TreatsBread Comas and Other Not-to-Miss Chicago Treats
Dr Kathy Miller shares her favorite Chicago pizzerias (the ones the locals want to keep secret) and other Chicago treats to enjoy during ASCO. Why not share your own Chicago guilty pleasures?
Medscape Oncology
Awesome Tips for Navigating ASCO and ChicagoAwesome Tips for Navigating ASCO and Chicago
Dr Sheetal Kircher gives tips for making the most out of the American Society of Clinical Oncology (ASCO) annual meeting and enjoying her hometown, Chicago.
Medscape Oncology
Lifestyle Changes Can Dramatically Cut Cancer IncidenceLifestyle Changes Can Dramatically Cut Cancer Incidence
From 20% to 70% of all cancer cases and half of all cancer deaths could be prevented by making modifications in lifestyle.
Medscape Medical News
Palliative Care Does Not Necessarily Mean End-of-Life CarePalliative Care Does Not Necessarily Mean End-of-Life Care
What is palliative care? Dr Maurie Markman talks about the importance of changing perceptions so that 'palliative care' is not immediately associated with end-of-life care.
Medscape Oncology
Plain Packaging for Cigarettes in the UK, Ireland, and FrancePlain Packaging for Cigarettes in the UK, Ireland, and France
Following a historic court ruling in the United Kingdom, cigarettes will now have to be sold in plain packaging with prominent graphic health warnings.
Medscape Medical News
A Treatment Vaccine for Low-Risk Prostate CancerA Treatment Vaccine for Low-Risk Prostate Cancer
A planned phase 2 trial will test a PSA protein-based immunotherapeutic vaccine in men at the time of clinical presentation with early-stage prostate cancer.
Medscape Medical News


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