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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
Brittany Maynard May Stay Longer Than Planned, She Says
Brittany Maynard is leaving her exit door open just a crack, allowing that she may live beyond Saturday, she said in a video released Wednesday night.

Kaci Hickox: Still Waiting to Hear From the State of Maine
Nurse Kaci Hickox and her boyfriend Ted Wilbur take a bike ride, telling reporters it's "something my partner and I like to do."
Kari Hickox: Still Waiting to Hear From the State of Maine
Nurse Kari Hickox and her boyfriend Ted Wilbur take a bike ride, telling reporters it's "something my partner and I like to do."

How Ebola Kills: Study Finds the Deadly Signs
An in-depth look at the patients in the current Ebola epidemic provides some important clues about how the virus kills. Hint: It's not bleeding.

Gene Trawls Haul in New Finds on Autism, MS
A series of DNA studies have found dozens of new genetic mutations that may cause autism as well as autoimmune diseases such as multiple sclerosis.

Nearly 50 Ebola Volunteers Returned Safely From Hot Zone
Close to 50 volunteers have come back safe and well from the Ebola hot zone in West Africa, aid agencies tell NBC News

Medical Experts Seek To Ban On-Campus Tanning
A new study reports an uptick in skin cancer rates among young people and that increased access to indoor tanning beds may be a factor. NBC's Erika Andrews has more.

Obama Speaks With Health Workers on Ebola Frontlines
On Wednesday afternoon, President Obama delivered remarks at a White House event with American health care workers fighting Ebola.

Why I Run: How Divorce Led Me to the NYC Marathon
Powerful essay on one runner?s path to the NYC marathon this weekend

Skin Cancer U? Students Tan on Campus at Top Colleges
Twelve percent of the nation?s top colleges and universities have tanning beds on campus, according to a new report.

Channel: Medscape Hematology-Oncology Headlines
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
Metastatic Cancer Neglected in New US Clinical Trial GroupMetastatic Cancer Neglected in New US Clinical Trial Group
Cooperative clinical trial groups sponsored by the National Cancer Institute have been reorganized. Metastatic disease is largely left out of the largest group's research agenda.
Medscape Medical News
Thyroid Cancer Genomics May Redefine Diagnosis, Treatment Thyroid Cancer Genomics May Redefine Diagnosis, Treatment
The Cancer Genome Atlas Network project expands the molecular landscape of papillary thyroid cancers, but will it improve patient care?
Medscape Medical News


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