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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
Europe to test Ebola blood treatment
Some patients infected with the Ebola virus have been treated with blood transfusions - and now a major European research project has been launched to test the treatment.
Global myeloma guidelines launched
New international guidelines seek to encourage doctors to diagnose multiple myeloma before symptoms occur.
Deal to boost blood cancer drug introduction
Two major cancer charities have teamed up to boost early clinical trials of drugs for patients with blood diseases, it has been announced.
Two genes closely linked to cancer
New discoveries have been made on the genetic causes of certain forms of cancer.
HIV only hiding, not cured
HIV may be able to hide for years in people who seem to be cured of infection, according to a new study.
Calcium tests to detect cancer?
Blood tests for high calcium levels could be used to detect a range of cancers at an early stage, researchers have revealed.
New hope for myeloma drug
British scientists may have found a drug that could tackle multiple myeloma without causing serious side-effects, it was announced last night.
SCID gene therapy 'effective and safe'
A new gene therapy for "bubble boy" disease appears to be both effective and safe, an international clinical trial has found.
Blood cell origins uncovered
New findings are challenging long-held beliefs about the origins of blood cells in the human body.
Neonatal Haematology
Video presentation by Irene Roberts, Professor of Paediatric Haematology, University of Oxford, John Radcliffe Hospital
Channel: NBC News Health
Lead Poisoning: A Hidden Danger at Shooting Ranges
With more women and youth joining the 40 million Americans who enjoy gun sports, experts say the use of lead ammunition can pose deadly risks.

Welcome Back, Bentley! Ebola Nurse, Dog to Be Reunited
A Dallas nurse who recovered from Ebola will soon be reunited with her dog, which has been sequestered since his owner became ill.

Brittany Maynard and Dan Diaz: A Love Story
Away from the campaign, the critics and the cancer, the love story of Brittany Maynard and Dan Diaz seems only to blaze more brightly as her final day looms.

Gerber Accused of False Claims on Baby Formula
Baby-food maker Gerber is being accused by the government of claiming falsely that its Good Start Gentle formula can prevent or reduce allergies in children.

Male Patients Feel Forgotten in Breast Cancer Battle
More than 2,000 male breast cancer cases have been tallied in the U.S. so far this year. What can men do to keep themselves healthy? Dawne Gee reports.

Ambassador Power: I'll Follow 'Strictest Protocols' on Ebola
U.S. Ambassador Power praised ?brave and altruistic? health workers, and said those returning from West Africa must follow "the strictest protocols."

Maine Gov.: Police are there to protect Kaci Hickox
Speaking to WSCH-TV, Maine Governor Paul LePage says Kaci Hickox is free to come out of her home, but that he doesn't want anyone to get within three feet of her, citing possible infection concerns.

Can a Class Shake Off the Effects of Social Media?
A class called ?Alone Together: Finding Intimacy in the Age of Facebook? aims to explore the effects of social media ? sometimes by giving it up.

Execution Date Set for 'Delusional' Murderer in Texas
Scott Panetti's lawyers say he's so mentally ill he thinks the devil is making the state put him to death.

NYC 'Actively Monitoring' 117 People for Ebola Risk
Most of the monitored came from West Africa on Oct. 11 or later. The list also includes hospital staff caring for Ebola patient Dr. Craig Spencer.

Channel: Medscape Hematology-Oncology Headlines
Longer Life, at Any Cost?Longer Life, at Any Cost?
Dr John Marshall asks his cancer patients on their first visit: How long do you want to live? Their answers have implications for the practice of oncology -- and the healthcare system as a whole.
Medscape Oncology
Cord Blood Transplant: In Children, One Will DoCord Blood Transplant: In Children, One Will Do
A randomized study has shown that clinical outcomes for children receiving two units of cord blood are similar to those for children receiving one unit.
Medscape Medical News
Should PIK3CA Inform Therapy Choice in Breast Cancer?Should PIK3CA Inform Therapy Choice in Breast Cancer?
Dr Lidia Schapira reports on a study showing that PIK3CA mutations may indicate trastuzumab resistance in HER2+ breast cancer but cautions use of the biomarker as a basis for clinical decisions.
Medscape Oncology
Now Canada Says Don't Use PSA Test for Cancer ScreeningNow Canada Says Don't Use PSA Test for Cancer Screening
Updated guidelines from the Canadian Task Force on Preventive Health Care recommend against using the PSA test in all men.
Medscape Medical News
Obesity Linked to Worst Outcomes in Children With ALLObesity Linked to Worst Outcomes in Children With ALL
A retrospective analysis reports that obese children with B-cell ALL have significantly worse outcomes following induction chemotherapy compared with their lean counterparts.
Medscape Medical News
Half of Biopsies for Bladder Cancer Inadequate for StagingHalf of Biopsies for Bladder Cancer Inadequate for Staging
A study suggested that about half of biopsies for bladder cancer are inadequate for proper staging, and low-quality biopsies are linked to higher mortality.
Medscape Medical News
Sequencing Radium-223 and Docetaxel in Prostate CancerSequencing Radium-223 and Docetaxel in Prostate Cancer
A prespecified analysis of the ALSYMPCA data suggests radium-223 can be used in sequence with docetaxel in metastatic castration-resistant prostate cancer.
Medscape Medical News
European OK for Olaparib in Ovarian CancerEuropean OK for Olaparib in Ovarian Cancer
The first ever PARP inhibitor is inching closer to approval, after Europe issued a positive opinion for its use in ovarian cancer
News Alerts


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