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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
New guideline for sickle cell
A new guideline for managing sickle cell disease recommends use of the drug hydroxyurea and transfusion therapy.
Stored blood stiffens with age, study finds
Blood that has been stored for a long time becomes less elastic and is unable to carry oxygen into the body's tiny microcapillaries,researchers have revealed.
New drug safe for leukemia patients
A whole new approach to treating cancer could open up after a drug trial targeting the mitochondria was found to be safe in leukemia patients, researchers have reported.
New drug for anemia of inflammation
A new treatment may be on the horizon for anemia caused by inflammation.
Redesign blood transfusion procedures - report
The health services need a complete "redesign" of blood transfusion procedures to eliminate errors and reduce side-effects, according to a major report published in the UK.
Lettuce could boost hemophilia treatment
Genetically altered lettuce could provide the key to improving treatment for hemophilia, researchers have revealed.
Screening works for severe immune disorder
A new study has investigated the usefulness of newborn screening for severe combined immunodeficiency.
Child leukemia deaths down by half
Death rates of children from leukemia have halved in the last ten years, according to an analysis published today.
Low cost test for sickle cell
A new test for sickle cell disease could cost just a few pence a time, researchers revealed last night.
Gene test for lymphoma changes
Norwegian researchers have announced new techniques for predicting when patients with B-cell lymphoma will face a down-turn in the disease.
Channel: NBC News Health
What to Know About the Plastic Beads in Your Toothpaste
Dentists are noticing something strange in the mouths of their patients.






Rob Ford Has Rare and Aggressive Cancer: Doctor
The Toronto mayor will have intense in-patient chemotherapy to treat the malignant liposarcoma.






Ebola-Infected Doctor Making Full Recovery
A medical missionary being treated for Ebola virus infection in Nebraska is almost better, his doctors said Wednesday.






Gene-Swapping Bacteria Are Making New Superbugs
Bacteria appear to be having the microbial equivalent of inter-species sex in hospital sinks, swapping genes that help them resist antibiotics.
Could Brain Injuries Be Behind NFL Domestic Violence?
With a growing number of NFL players involved in domestic abuse grabbing headlines, some are starting to wonder about a concussion connection.






Why One Dad Hates Homework as Much as His Kid Does
Homework is back, and it is bending backs, too. It is a heavy load for a kid to carry, and I am as unhappy about it as my 11-year-old son.
U.N. Stops Syria Vaccine Campaign After 15 Children Die
The United Nations says it has stopped a vaccination campaign in northern Syria after at least 15 young children died.






Do Violent Movies Cause Aggression? Depends, Study Shows
Can violent movies contribute to real-world mayhem? The answer may lie in the brain of the beholder, new research suggests.






Concussion Sensors Aim to Help Young Football Players
Some youth football leagues and high schools are using new impact sensors that tell coaches when a player has taken a potentially serious hit.






How Can Diet Sodas Make You Fat? Study May Explain It
Researchers trying to figure out whether artificial sweeteners could make people fat think they?ve found a possible explanation.
Channel: Medscape Hematology-Oncology Headlines
Votes Are In for 'Top 5 Advances in Modern Oncology'Votes Are In for 'Top 5 Advances in Modern Oncology'
As part of its 50th anniversay celebrations, the American Society of Clinical Oncology invited physicians, patients, and the public to vote on top advances.
Medscape Medical News
'Scary' Decline in Funding for Cancer Research'Scary' Decline in Funding for Cancer Research
The impressive progress in cancer treatment that has been made in recent years is in serious danger of faltering because of research budget cuts, says the American Association for Cancer Research.
Medscape Medical News
Practice Changing (Again): Stereotactic RT for Lung CancerPractice Changing (Again): Stereotactic RT for Lung Cancer
Latest results on stereotactic body radiation therapy (SBRT) for lung cancer are reassuring and should continue to change practice, say researchers.
Medscape Medical News
Single-Fraction RT for Bone Mets Should Be 'Standard'Single-Fraction RT for Bone Mets Should Be 'Standard'
In the first-ever 'real world' study of palliative radiotherapy for bone metastases, single and multiple fractions were equivalent.
Medscape Medical News
Urine HPV Test as Alternative to Cervical SmearUrine HPV Test as Alternative to Cervical Smear
A simple urine test to screen for HPV is less invasive and may be more acceptable to women, but further evaluation is needed.
Medscape Medical News
Paclitaxel Plus RT Controls Advanced Endometrial CancerPaclitaxel Plus RT Controls Advanced Endometrial Cancer
Five-year disease-free and overall survival rates were superior to historic controls following concurrent administration of paclitaxel plus pelvic radiation.
Medscape Medical News
CAR T Cells: A Look Under the Hood and Down the RoadCAR T Cells: A Look Under the Hood and Down the Road
Lost your way in immunotherapy? Dr. Mark Adler provides clinicians a roadmap for navigating cancer immunotherapy and takes one of the most promising approaches -- CAR T cells -- for a test drive.
Medscape Oncology
ASTRO Issues More 'Don't' RecommendationsASTRO Issues More 'Don't' Recommendations
The radiation oncology organization has a new set of 5 practices that should be stopped or only used occasionally.
Medscape Medical News
Male Pattern Baldness Linked to Aggressive Prostate CancerMale Pattern Baldness Linked to Aggressive Prostate Cancer
Men with a certain pattern of baldness appear to have a higher risk of developing aggressive prostate cancer.
Medscape Medical News
340B Drug Pricing Program Needs Updating, Says ASCO340B Drug Pricing Program Needs Updating, Says ASCO
After 2 decades, guidance is needed to direct the future of the 340B Drug Pricing Program.
Medscape Medical News

 

 
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