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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
Cell conversion makes new blood cells
Scientists have discovered a set of genetic 'keys' that can reprogram skin cells to create red blood cells.
CML treatment hope from precision medicine
British researchers have unveiled a potential new treatment for chronic myeloid leukemia.
Selinexor combination trial results announced
A US-based phase 1 trial that combined a new cancer drug with two other therapies has shown promising results among patients with relapsed and refractory multiple myeloma.
Call to increase blood donation
Much of the world needs to increase the rate of voluntary unpaid blood donation, according to a new analysis.
Protein linked to aggressive myeloma
The proliferation of a protein has been linked to extramedullary disease, an aggressive multiple myeloma.
POLLUX trial success for myeloma care
A trial into a new immunotherapy treatment for patients with multiple myeloma has ended early after "significant success".
AML is 11 diseases - study
Acute myeloid leukemia is at least 11 different diseases, according to a major new study.
Frailty link to transplant mortality
The risk of dying among frail young bone marrow transplant survivors is double that of others, a new US-based study has revealed.
Mayday signals behind leukemia cell resurgence
An explanation as to why leukemia can return and thrive after treatment may be found in "mayday" signals that are released by some cancer cells, according to a new study.
Leukemia drug too costly - UK regulator
The high cost of a popular leukemia drug means that its use should only be considered for patients with specific genetic changes, English regulators say.
Channel: NBC News Health
Flint Kids Were Poisoned by Lead in Water: CDC
Lead levels in kids' blood shot up just after Flint, Michigan changed its water supply and didn't fall until months later, the CDC says.
Deadly Amoeba Kills Teen, Forces N.C. Water Park to Close
A popular North Carolina water park suspended part of its operation Friday after health officials found a brain-destroying amoeba in the water there.
Overdose Deaths Overwhelm Coroners
Soaring numbers of overdose deaths mean bodies pile up in medical examiners' offices.
White House Threatens Veto of Zika Funding Bill
President Barack Obama said Thursday he'd veto a new measure coming from Congress to pay for the Zika fight.
Senate Reaches Deal on GMO Labels
Senators have a bipartisan deal to require labeling of genetically modified ingredients nationally.
WHO Launches Emergency Yellow Fever Vaccination
The World Health Organization has launched an emergency yellow fever vaccination campaign in Africa.
'Autism Glass' App Helps Kids Read Emotions
A new app designed for Google Glass helps kids with autism figure out the expressions on the faces of friends and family.
Avoiding Lawnmower Tragedies
Experts say 17,000 children are injured by lawnmowers each year, with hundreds of accidents resulting in amputations. WDIV's Dr. Frank McGeorge
Swimmer's Ear Season Arrives
With kids hitting the pool to beat the heat, doctors are seeing an increase in the condition commonly known as "swimmer's ear". KPLC's Britney Glaser reports.
Can I Ever Get Pregnant? Your Questions About Zika
The World Health Organization updated its recommendations on pregnancy, sex and the risk of Zika virus.
Channel: Medscape Hematology-Oncology Headlines
Testing After DCIS Needle Biopsies: $35 Million BoondoggleTesting After DCIS Needle Biopsies: $35 Million Boondoggle
Testing core needle biopsy specimens of ductal carcinoma in situ (DCIS) for hormone receptors is wasteful because testing is better done after surgery.
Medscape Medical News
Cancer Moonshot: We Have LiftoffCancer Moonshot: We Have Liftoff
Initial reaction to the Moonshot ranged from cynicism to guarded optimism, but no one denies that momentum is building for this national cancer initiative -- and Big Data are the rocket boosters.
Medscape Oncology
Maximum Resection in Glioblastoma Improves SurvivalMaximum Resection in Glioblastoma Improves Survival
Patients with glioblastoma should undergo the maximum possible resection during surgery to have the greatest chance of survival, the results of US meta-analysis indicate.
Medscape Medical News
Oncologists Discuss Bestseller: When Breath Becomes AirOncologists Discuss Bestseller: When Breath Becomes Air
At a special session during the recent ASCO meeting, oncologists got a chance to ask questions about the neurosurgeon author of the bestselling book who died from lung cancer at age 37.
Medscape Medical News
'End of Controversy': Robotic Prostatectomy Is Winner'End of Controversy': Robotic Prostatectomy Is Winner
A new national database study shows that the high-tech approach improves oncologic outcomes; this prompted a grand declaration from an expert.
Medscape Medical News
After Negative PET, Drop Bleomycin in Hodgkin's LymphomaAfter Negative PET, Drop Bleomycin in Hodgkin's Lymphoma
After a negative PET scan, patients with advanced Hodgkin's lymphoma can skip bleomycin from the ABVD regimen and still reap clinical benefits with fewer toxicities.
Medscape Medical News
Trastuzumab Biosimilar: An Understudy Waits in the WingsTrastuzumab Biosimilar: An Understudy Waits in the Wings
Drs Miller and Rugo talk about the trastuzumab biosimilar and what it could mean for patient care worldwide, the lessons from a failed vaccine study, and a practice change that can prevent stomatitis.
Medscape Oncology
New Triplet Therapy in Multiple MyelomaNew Triplet Therapy in Multiple Myeloma
A new triplet therapy has shown high responses with manageable tolerability in newly diagnosed multiple myeloma.
Medscape Medical News
Emerging Therapies for Metastatic Breast CancerEmerging Therapies for Metastatic Breast Cancer
Therapeutic options are set to increase for patients with refractory HR-positive or HER2-positive metastatic breast cancer, as evidenced by presentations at ASCO 2016.
Medscape Oncology
Finally, RCT Results for Proton Therapy in a CancerFinally, RCT Results for Proton Therapy in a Cancer
Results from the first randomized controlled trial of proton therapy indicate that the new technology is no better than IMRT in the treatment of lung cancer.
Medscape Medical News


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