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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
How junk DNA causes cancer
DNA in genetic "deserts" creates wormhole-like links that can trigger cancer in far-off parts of the human genome, according to British scientists.
Pregnancy treatment boosts hemophilia care
Treatment in the womb could condition the bodies of children with hemophilia to accept treatments, French researchers have reported.
In-flight transfusion saves lives
Trauma patients air-lifted to hospital benefit from in-flight blood transfusions, according to a major new study.
Test for stem cell transplant survival
Scientists have discovered a biomarker that predicts the chance of survival after stem cell transplant for aplastic anemia.
Iron pills for blood donors?
People who give blood could benefit from low-dose oral iron supplements, new research suggests.
Hormone risk after child cancer treatment
People who have survived cancer treatment as children face a high risk of suffering from hormone deficiencies as adults, researchers have warned.
Transplant hope for fatal bone disease
Bone marrow transplants have successfully been used to treat infants with a rare and fatal bone disease, researchers have reported.
Kidney drug hope for leukemia
A drug for kidney cancer could help overcome drug resistance in patients with leukemia, researchers have reported.
App for sickle cell
A smartphone app can help patients with sickle cell disease manage their condition, doctors in London, UK, say.
Trauma transfusion strategies assessed
Patients with severe trauma and major bleeding benefit from receiving a specific ratio of plasma, platelets, and red blood cells, new research shows.
Channel: NBC News Health
Ebola Survivor Donating Plasma
Ebola survivor Nancy Writebol and her husband David are two volunteers helping to test an experimental vaccine against the deadly virus.






Ebola Victim Returns to Liberia, Aids Research
Nancy and David Writebol are headed back to Liberia Sunday, eight months after she became the second American infected with the Ebola virus.






Parents' Bucks - Not Marriage - Impact Kids' Well-Being
Which matters more to a child's future: living in a traditional family or financial security? The short answer: money, a new analysis concludes.






Wife of Ebola Survivor Donates Plasma
Nancy Writebol, the wife of David Writebol, an American who was infected with Ebola in Africa, talks with NBC News' Maggie Fox about why she is donating plasma.






New HPV Vaccine Will Prevent More Cancer: Panel
Children and young adults should get Merck's new HPV vaccine to prevent various forms of cancer, including cervical cancer, federal advisers say.






Panel Advises Sparing Use of New Meningitis B Vaccines
Two new meningitis vaccines just approved should only be used for vulnerable people and during outbreaks and not be given routinely, a panel says.






Girl Scouts Turn Into YouTube Stars To Boost Cookie Sales
Tech-savvy Girl Scouts are adding YouTube commercial videos to their to-do lists, along with door-to-door selling.






No High Risk: Marijuana May be Less Harmful Than Alcohol, Tobacco
Recreational pot ? set to go legal in Washington, D.C. on Thursday ? is less dangerous than both alcohol and tobacco, scientists assert.






Report Slams U.S. Ebola Response and Readiness
A scathing report says the U.S. failed ethically in its response to Ebola -- and risked lives in the process






Premature Death More Likely if You Have ADHD: Study
People with ADHD are twice as likely to die earlier than those without the condition, researchers reported Wednesday.






Channel: Medscape Hematology-Oncology Headlines
Online Petition to Lower Cancer Drug Prices in USOnline Petition to Lower Cancer Drug Prices in US
Leukemia expert and outspoken critic of the high prices now being charged for many new cancer drugs is moving on to invoke 'people power.'
Medscape Medical News
Ceritinib (Zykadia) Recommended for Approval in EUCeritinib (Zykadia) Recommended for Approval in EU
In addition to ceritinib, which targets ALK-positive NSCLC, the agency recommended approval of pegfilgrastim and new indications.
International Approvals
Sky's the Limit for US Cancer Drug Prices, Says Top DocSky's the Limit for US Cancer Drug Prices, Says Top Doc
An American oncologist suggests that 'havoc' is likely on the way in the healthcare system unless change comes.
Medscape Medical News
Too Many Scans for Aggressive Lymphoma in Clinical TrialsToo Many Scans for Aggressive Lymphoma in Clinical Trials
Patients with aggressive lymphoma treated with curative intent should not have to receive the large number of scans that are mandated in clinical trials.
Medscape Medical News
'Game-Changing' Research in Pancreatic Cancer'Game-Changing' Research in Pancreatic Cancer
The most comprehensive description to date of genomic events in pancreatic carcinogenesis has identified a patient subgroup with exceptional responses.
Medscape Medical News
Lenalidomide Now for Newly Diagnosed Multiple Myeloma PatientsLenalidomide Now for Newly Diagnosed Multiple Myeloma Patients
The FDA has expanded the indication for lenalidomide to include newly diagnosed multiple myeloma patients.
Medscape Medical News
Mammography Declines After 2009 USPSTF RecommendationsMammography Declines After 2009 USPSTF Recommendations
Some American women took the advice of the US Preventive Services Task Force (USPSTF) on breast cancer screening and ran with it.
Medscape Medical News
VEGF Inhibitors Disappoint in Adjuvant Renal Cell CarcinomaVEGF Inhibitors Disappoint in Adjuvant Renal Cell Carcinoma
Sorafenib and sunitinib do not prolong disease-free survival in patients with completely resected, locally advanced kidney cancer at high risk for recurrence.
Medscape Medical News
Defibrotide Significantly Boosts Survival in VODDefibrotide Significantly Boosts Survival in VOD
Defibrotide significantly improved outcomes across all subgroups of patients who developed veno-occlusive disease after stem cell transplant.
Medscape Medical News
Gene Variant Linked to Increased Toxicity of VincristineGene Variant Linked to Increased Toxicity of Vincristine
A previously unknown gene variant has been linked to increased risk and severity of vincristine-induced peripheral neuropathy in children with acute lymphoblastic leukemia.
Medscape Medical News

 

 
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