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Welcome!

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.

Frequently
Asked
Questions

Glossary of
PNH Terms
 

PNH
Files
 

Website
Links
 

 
   

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
Blood treatment minimizes malaria infection
A new blood treatment that combines UV radiation and vitamin B could minimize the risk of malaria infection following blood transfusions.
Hope for novel multiple myeloma drug
Results have been released from a new trial of a potential therapy for multiple myeloma.
New findings on damage to stored blood
New research indicates that some red blood cell storage processes cause less damage to the cells than others.
New magnetic therapy for thrombosis developed
A new treatment for thrombosis could be on the way after scientists in Russia developed a safe, intravenous injection method for therapeutic enzymes.
Magnesium may aid platelet disorder
A new treatment for coagulation disorders may be on the way, according to researchers at the University of Wurzburg, Germany.
Stem cell therapy has no cancer risk
Regenerative medicines made from induced pluripotent stem (iPS) cells do not increase the risk of cancer, according to new findings.
Mouse model could herald new AML therapies
New therapies for an aggressive type of acute myeloid leukemia could soon be developed following a successful trial with a mouse model.
Drug's 'exciting' role in stem cell transplant
The anti-cancer chemotherapy drug cyclophosphamide has an exciting role in stem cell transplant, according to some of the world's leading scientists.
Backing for daratumumab for multiple myeloma
A drug that can treat people with multiple myeloma is a step closer to being available for patients after The European Medicines Agency (EMA) recommended it for conditional approval.
Varied review for hemophilia care
Men with hemophilia have experienced some improvements in care over the last half-century - but not all have felt the benefits, according to a new review.
Channel: NBC News Health
U.S. Reports First Zika Virus Death, in Puerto Rico
A man infected with Zika virus in Puerto Rico has died from complications of the infection, health officials said Friday.
Feds Investigating Dole After Deadly Listeria Outbreak
Dole Food Co Inc said the U.S. Department of Justice was investigating a deadly Listeria monocytogenes outbreak linked to packaged salad products.
How Can Zika Kill You? Your Questions Answered
Zika virus has killed a man in Puerto Rico. The man, in his 70s, is the first reported U.S. death from the virus.
Abortions Around Borders: Meet Women on Web
Dr. Rebecca Gomperts has used a ship, drones and now the web to increase access to abortions.
Meet the Doctor Behind Abortion by Drone, Mail, Boat
When it comes to abortion access in Europe, there's one group whose entrepreneurial approach has turned heads.
Joe Biden Demands Faster International Action on Cancer Research
Speaking about cancer research at a Vatican conference on regenerative medicine, the vice president described cancer as "a constant emergency&quo
Belgium Is Giving Radiation Pills to Entire Population
Belgium is to issue iodine tablets to its entire population, months after ISIS bombers spied on a nuclear scientist and hoped to build a "dirty bomb."
Europe's Abortion Fight: Women Share Their Stories
What's it like to have an abortion in Europe? Women share their stories with NBC News.
Hospital Caring for Kids 'Destroyed' by Deadly Airstrike
US blamed Syrian government for airstrike on Aleppo hospital that killed more than a dozen patients and staffers.
First Commercial Zika Test Gets FDA OK
The first commercial U.S. test to diagnose Zika virus won emergency use authorization from the Food and Drug Administration Thursday.
Channel: Medscape Hematology-Oncology Headlines
ASCO's TAPUR Study: Off-Label Drugs for Actionable MutationsASCO's TAPUR Study: Off-Label Drugs for Actionable Mutations
Dr Edward Kim, a principal investigator in ASCO's TAPUR study, describes the trial's unique approach to evaluating the efficacy of targeted cancer therapies prescribed off-label.
Levine Cancer Institute
European Panel Endorses Three Cancer DrugsEuropean Panel Endorses Three Cancer Drugs
The European regulators were busy this week with announcements about two drugs for hematologic cancers and one for neuroendocrine tumors.
International Approvals
'Bad Luck' or Environment? Depends on the Cancer'Bad Luck' or Environment? Depends on the Cancer
Another study looks again at the data that were analyzed for contributions from instrinsic cellular factors, such as mutations and environmental factors.
Medscape Medical News
No Worries: PSA 'Bounce' With Prostate Cancer Tied to SexNo Worries: PSA 'Bounce' With Prostate Cancer Tied to Sex
A small rise and fall in PSA level commonly occurs after radiation therapy for prostate cancer. These bounces are strongly associated with erectile function status, a new study says.
Medscape Medical News
Melanoma: ?Tail? on Survival Curve Is Getting LongerMelanoma: ?Tail? on Survival Curve Is Getting Longer
Dr Jeffrey Weber, Medscape's new commentator on melanoma and immunotherapy, discusses impressive data on overall survival and combination therapy presented at AACR 2016.
Medscape Oncology
Metastectomies: Local Approaches to Breast Cancer MetastasesMetastectomies: Local Approaches to Breast Cancer Metastases
In expert panel reported on the increasing the use of radiation therapy and surgery to control low-volume metastatic disease in patients with breast cancer, as part of the 2016 EBCC in Amsterdam.
Medscape Oncology
New Wrinkle in Cancer Growth PreceptNew Wrinkle in Cancer Growth Precept
Dr David Kerr explains a new theory as to how cancer may gain blood supply by a process other than angiogenesis, which may provide insight into mechanisms of resistance to antiangiogenic agents.
Medscape Oncology
New Immunotherapies Bring New Questions in Lung CancerNew Immunotherapies Bring New Questions in Lung Cancer
Dr Mark Kris assesses the complicated risks and benefits of using nivolumab and pembrolizumab for patients with lung cancers.
Medscape Oncology
Colorectal Cancer Screening: Not All It's Cracked Up to Be?Colorectal Cancer Screening: Not All It's Cracked Up to Be?
Colorectal cancer screening works, but other factors are at play as the incidence and mortality of the disease drops in the United States, say a pair of experts.
Medscape Medical News
Pancreatic Cancer Surveillance Worth It in High-Risk PatientsPancreatic Cancer Surveillance Worth It in High-Risk Patients
Surveillance of patients at high risk for pancreatic cancer is relatively successful in that it can detect potentially cancerous lesions at a resectable stage.
Medscape Medical News

 

 
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