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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
Sierra Leone Begins Three-Day Ebola Lockdown
Thousands of health workers knocked on doors across Sierra Leone on Friday as a three-day lockdown began to fight the disease.






Angelina Effect: Jolie's Surgery Prompts Cancer Tests
Angelina Jolie's decision to make public her double mastectomy more than doubled the number of women in Britain seeking to have genetic breast cancer tests.






Spank Debate: Parents Say Punishment Made Them Better
The Adrian Peterson case is prodding some Americans to ponder: ?If physical punishment from a parent is so damaging, why did it work on me??






Eight Killed in Attack on Ebola Team in Guinea
Eight people, including three journalists, were killed in an attack on a team trying to educate locals on the risks of the Ebola virus in Guinea.






Feeling Crowded? World Population Set to Explode Even More
Think the world is crowded now? The population will probably hit 11 billion by 2100, according to new estimates.






Do Something About Those Superbugs, Obama Orders
President Barack Obama issued an executive order Thursday telling his administration to hurry up and do something about drug-resistant bacteria.






Most Kids Who Died From Flu Had Skipped Vaccine
Half of Americans are still failing to get vaccinated against influenza, even though it kills thousands every year, health experts said Thursday.






Obamacare Enrollment Now 7.3 Million, U.S. Says
The Obama administration says 7.3 million people have signed up for subsidized private health insurance under the health care law.






Air Force Airmen No Longer Have To Say 'So Help Me God'
The U.S. Air Force has changed ther enlistment oath policy.






Should Teachers 'Friend' Students on Social Media?
Parents want to know where the boundaries should be when it comes to educators and students using technology to communicate.






Channel: Medscape Hematology-Oncology Headlines
Idelalisib (Zydelig) Approved in EuropeIdelalisib (Zydelig) Approved in Europe
The first-in-class oral agent is now approved in the EU for the treatment of chronic lymphocytic leukemia and follicular lymphoma.
International Approvals
Mandatory Extended RAS Testing for mCRCMandatory Extended RAS Testing for mCRC
Dr Alok Khorana discusses a meta-analysis that lends support for extended RAS testing to identify patients with advanced colorectal cancer who should not receive EGFR inhibitors.
Medscape Oncology
ASCO Calls for Appropriate & Accurate Data TransparencyASCO Calls for Appropriate & Accurate Data Transparency
In response to the CMS data release and questions by a US Senate committee, ASCO offers recommendations for future Medicare physician data releases.
Medscape Medical News
'Dying in America' IOM Report Calls for Major Reform'Dying in America' IOM Report Calls for Major Reform
The US health system needs major reform to meet end-of-life care needs of most Americans, says a new report from the Institute of Medicine.
Medscape Medical News
PET-CT Better Than CT in Follicular LymphomaPET-CT Better Than CT in Follicular Lymphoma
PET-CT is better than conventional contrast-enhanced CT in evaluating patients with follicular lymphoma, and should become the gold standard, say researchers.
Medscape Medical News
What's Hot at ESMO 2014What's Hot at ESMO 2014
New data promise to be practice changing, and will change the standard of care for melanoma, prostate, and lung cancer, among others.
Medscape Medical News
RT for Breast Cancer Does Not Up Risk for LymphedemaRT for Breast Cancer Does Not Up Risk for Lymphedema
Researchers uncovered good news about radiation therapy and the risk for arm swelling from a large trial of node-negative breast cancer patients.
Medscape Medical News
Genotyping in Lung Cancer: New Opportunities, New ChallengesGenotyping in Lung Cancer: New Opportunities, New Challenges
Dr Ronald Wharton reviews images from a patient with a bioprosthetic aortic valve and a mitral-valve ring annuloplasty.
Medscape Oncology
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

 

 
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