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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
Can I Ever Get Pregnant? Your Questions About Zika
There are new recommendations on pregnancy, sex and the risk of Zika virus.
FDA Suggests Testing All Donated Blood for Zika
All blood donations should be tested for Zika virus, the Food and Drug Administration said Friday.
Hair Transplants Make Some Men Look Better
Men who choose to have hair transplants usually do look better afterwards, a study confirms.
Obamacare Program Saved Medicare $466 Million
A plan to make hospitals and doctors work better together saved Medicare $466 million last year, a federal report finds.
Face Transplant Recipient: 'I'm the Same Old Pat'
A year after he got a face transplant, Patrick Hardison is driving, swimming with his kids and walking down the street without fear of getting stared
Study Shows How Zika Is Sexually Transmitted
A new study provides more evidence that the Zika virus spreads sexually, and shows how.
Orlando Hospitals Won't Bill Nightclub Massacre Victims
'We hope this gesture can add to the heart and goodwill that defines Orlando,' one hospital CEO said.
No One Caught Zika at the Olympics, WHO Says
No one appears to have caught Zika at the Olympics, the World Health Organization said Thursday.
Here Are All of Donald Trump's Flip-Flops on Big Issues
To understand and track Trump's views, we've compiled a list of his past and present positions on issues since he announced his candidacy.
Are Some People Hard-Wired for Coffee?
Some people drink a cup of coffee in the morning and they're fine for the day. Others need fixes all day long. Now researchers think they know why.
Channel: Medscape Hematology-Oncology Headlines
7 Easy Steps to Immune Enlightenment for Oncologists7 Easy Steps to Immune Enlightenment for Oncologists
Dr David Kerr discusses a paper that explains the anticancer T-cell immunity cycle in seven steps, and how understanding it can help personalize immunotherapy in candidates for PD-1 inhibitors.
Medscape Oncology
Less Treatment for More Benefit in Breast Cancer?Less Treatment for More Benefit in Breast Cancer?
An expert panel at ASCO weighed in on whether current genomic tools can be relied on for a yay or nay regarding specific uses of chemotherapy, radiation, and surgery in breast cancer.
Medscape Oncology
Cuba's Lung Cancer Vaccine: Hype or Hope?Cuba's Lung Cancer Vaccine: Hype or Hope?
With relations thawing between the US and Cuba, a lung cancer vaccine has caught the attention of the cancer community and the media.
Medscape Medical News
MammaPrint Finds Breast Cancer Patients Who Can Skip ChemoMammaPrint Finds Breast Cancer Patients Who Can Skip Chemo
The large European MINDACT study shows that the 70-gene signature test MammaPrint, used in conjunction with clinical risk, could prevent chemo use in 46% of patients.
Medscape Medical News
Smart Syringe Pumps Can Err at Low Flow Rates, FDA WarnsSmart Syringe Pumps Can Err at Low Flow Rates, FDA Warns
The agency outlines precautions clinicians should take to avoid irregular flow patterns of high-risk, life-sustaining therapies that can endanger patients.
News Alerts
Early Signals From PD-1 Checkpoint Inhibitors in First-Line NSCLCEarly Signals From PD-1 Checkpoint Inhibitors in First-Line NSCLC
Dr Jack West analyzes the most recent data on PD-1 checkpoint inhibitors as first-line non-small cell lung cancer therapy and predicts how these relatively new agents will affect standard treatments.
Medscape Oncology
Conflicts of Interest Frequent Among NCCN Guideline AuthorsConflicts of Interest Frequent Among NCCN Guideline Authors
Financial conflicts of interest are frequent among panel members authoring the National Comprehensive Cancer Network guidelines, raising concerns about the integrity of the scientific process.
Medscape Medical News
Overweight/Obesity Linked to Eight More CancersOverweight/Obesity Linked to Eight More Cancers
Having excess body fat has already been linked to an increase in the risk for five cancer types -- now another eight cancer types are added to the list.
Medscape Medical News
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


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