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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
Here's How Cow Antibiotics May Affect Climate Change
How are antibiotics, cow patties and climate change all linked?
Super-Bad Superbug Found for First Time in U.S
A drug-resistant "superbug" that doctors have been dreading has shown up in the U.S. for the first time, researchers reported Thursday.
People With Cancer-Prone DNA Can Reduce Risk
Even people who carry genetic changes that put them at higher-than-average risk of breast cancer can lower that risk, sometimes by a lot.
WHO Launches New Approach to Emergencies
Stung by failures in its response to Ebola, the World Health Organization is revamping how it responds to emergencies to become nimbler, more reactive
HBO Series Producer, Alleged Dealer Held in Doctor's Death
Their arrests come eight months after the death of Dr. Kiersten Cerveny, a Long Island dermatologist who was found in a Manhattan apartment building.
Why Stress Tests Could Be More Stressful Than They're Worth
The use of cardiac stress tests have skyrocketed, but a leading cardiologist says they're often unnecessary and can lead to more expensive and riskier procedures.
FDA Takes More Time on Muscular Dystrophy Drug Approval
Federal health regulators will take more time to review a highly contested drug for muscular dystrophy.
Most Military Suicide Attempts Come Before Combat
Most soldiers who attempt suicide haven't even been deployed yet, a new study finds.
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.
Channel: Medscape Hematology-Oncology Headlines
Chemo for Adult Sarcomas: Murky Data and Experts' InsightsChemo for Adult Sarcomas: Murky Data and Experts' Insights
The paucity of data on the relative benefits of chemotherapy in adult soft-tissue sarcomas muddies the clinical decision-making waters, say sarcoma experts, who offer some advice, anyway.
Medscape Medical News
Economic Crisis of 2008 Followed by Excess Cancer Deaths Economic Crisis of 2008 Followed by Excess Cancer Deaths
An analysis of data from 75 countries shows an increase of cancer deaths, particularly in countries without universal healthcare coverage.
Medscape Medical News
ASCO Issues First Practice Guideline for Cervical CancerASCO Issues First Practice Guideline for Cervical Cancer
ASCO has issued a 'resource-stratified' guideline for cervical cancer that offers treatment recommendations tailored to resource availability.
Medscape Medical News
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


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