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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
Chemotherapy drug may affect foetus fertility
A commonly used cancer drug may affect the fertility of baby girls in the womb, researchers warned today.
Gene editing hope for sickle cell and thalassemia
Scientists are hopeful that new techniques in genome editing could benefit patients with sickle cell disease and beta-thalassemia.
Hope for child leukemia test
A new test for childhood leukemia could have "major implications" for diagnosis and treatment, its developers at Manchester University say.
Letters campaign for donors goes global
An innovative campaign to recruit blood donors goes global today - and blood group letters will go missing worldwide.
Researchers explain leukemia gene
The genetic variation most commonly found in patients with chronic lymphocytic leukemia plays a key role in preventing cell death, researchers have reported.
Advance for myelodysplastic syndrome diagnosis
The diagnosis of myelodysplastic syndrome could become more accurate with the use of next-generation sequencing methods, experts say.
Ibrutinib approved - in Scotland but not England
Scottish decision-makers have approved a drug for blood cancers - while its use in England remains under negotiation.
New hope for myeloma drug
A new class of drugs still in laboratory development may provide an effective treatment for multiple myeloma, researchers have reported.
T cell can root out viruses
A specialist kind of T cell may be able to root out hidden viruses, helping to cure currently incurable infections, according to Australian researchers.
Cord blood best for transplant?
Using cord blood for stem cell transplants is linked to a reduced rate of graft versus host disease, according to a new study.
Channel: NBC News Health
Another New Zika Case Found in Florida
Florida reported a new homegrown case of Zika virus Wednesday, this one in Palm Beach County.
'No More Stares': Firefighter Enjoys New Face
A year after he got a face transplant, Patrick Hardison is driving, swimming with his kids, and walking down the street without getting stares.
Doctors Return to Clinics After Sex Abuse
Doctors found to have sexually abused patients aren't usually punished and can return to practice after "treatment", an investigation has found.
Florida Teen Survives 'Brain-Eating' Amoeba Infection
Sebastian DeLeon, 16, is just one of four people in the United States who have survived a Naegleria fowleri infection in the past 50 years.
Should I Worry About Zika? Your Questions Answered
Zika has now caused two separate outbreaks in the Miami area, infecting tourists from Texas, New York and Taiwan. Americans are starting to worry.
Images Show Zika's Destruction of Babies' Brains
Missing brain tissue. Deformed spinal cords. Folded skills. The images of Zika's brain destruction are horrifying.
Expect More U.S. Zika Virus Cases, Experts Say
Zika virus has turned up in a new part of Florida, and experts say it's almost certainly not done spreading.
Drug Company Exec Pay Jumped as EpiPen Prices Hiked
As Mylan's EpiPen prices rose over 400 percent, pay for its top executive jumped over 600 percent.
Zion Harvey: A Year After His Double Hand Transplant
NBC News recently visited with Zion Harvey, who last year became the first child to receive a double hand transplant.
New Zika Case Found in Florida's St. Petersburg
Florida's got a new case of Zika virus, this one on the Gulf coast, state officials said Tuesday.
Channel: Medscape Hematology-Oncology Headlines
Rethinking Cytoreductive Nephrectomy in Metastatic RCCRethinking Cytoreductive Nephrectomy in Metastatic RCC
Recent data suggest that cytoreductive nephrectomy may confer a significant survival advantage in metastatic renal cell carcinoma.
Medscape Oncology
Cancer Surpasses CVD as Leading Cause of Death in 22 StatesCancer Surpasses CVD as Leading Cause of Death in 22 States
Cardiovascular disease has been the leading cause of death in the United States for decades. Not anymore: cancer has surpassed it in some states and ethnic groups.
Medscape Medical News
Risk for Breast Cancer With HRT Higher Than Thought? Risk for Breast Cancer With HRT Higher Than Thought?
Hormone replacement therapy with a combination of estrogen and progestogen triples the risk for breast cancer, a new study concludes.
Medscape Medical News
Do Cell Phones Cause Cancer? Maybe Yes and NoDo Cell Phones Cause Cancer? Maybe Yes and No
It could be that cell phones do not directly cause cancer but instead act as a trigger after exposure to other types of carcinogens.
Medscape Medical News
PARP Inhibitors Promising as Ovarian Cancer Maintenance TherapyPARP Inhibitors Promising as Ovarian Cancer Maintenance Therapy
Two recent trials have demonstrated that using a PARP inhibitor as a maintenance strategy for ovarian cancer substantially prolongs the time to subsequent disease progression.
Medscape Oncology
Open vs Robotic Radical Prostatectomy: Is This the Final Word?Open vs Robotic Radical Prostatectomy: Is This the Final Word?
Dr Gerald Chodak reviews the latest report on open vs robotic radical prostatectomy and suggests that the experience of the surgeon should be the main consideration for patients.
Medscape Urology
Prescription Drug Costs: Why Do They Keep Going Up?Prescription Drug Costs: Why Do They Keep Going Up?
A new paper examines the reasons for the continuing rise of drug costs in the US and offers several strategies to control pricing.
Medscape Medical News
Organ Donations From Cancer Patients 'on the Rise'Organ Donations From Cancer Patients 'on the Rise'
Almost 700 organ transplants were performed from more than 250 cancer patients in the UK in the past 5 years, along with more than 1000 corneal transplants from affected patients, latest figures reveal.
Medscape Medical News
Tailored Mammography Improves Benefit-to-Harm BalanceTailored Mammography Improves Benefit-to-Harm Balance
Screening mammography intervals should be tailored to a woman's risk for breast cancer, as well as individual breast density, rather than to age alone.
Medscape Medical News
'Alarming' Decrease in Survival as Surgery Underused in mRCC'Alarming' Decrease in Survival as Surgery Underused in mRCC
Cytoreductive nephrectomy in patients with metastatic renal cancer has been underutilized since the advent of targeted therapy, despite lack of hard evidence that survival is not adversely affected.
Medscape Medical News


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