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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
Trauma patients' own blood best for transfusion
Trauma patients have good outcomes when transfused with their own pre-collected blood, according to new research.
Excellence award for research at London college
Medical researchers at King's College London, UK, have been honored for their outstanding work into cancers of the blood.
T cell removal improves transplant success
Scientists have developed a new technique which they believe benefits bone marrow transplant patients.
New myeloma gene theory
Swedish scientists have come up with a new theory about the genetic development of multiple myeloma.
Hemophilia treatments in research pipeline
The drug company Pfizer has carried out a series of studies on new treatments for hemophilia, it has reported.
Massage and laughter therapy no help to transplant children
Complementary therapies appear not to benefit children undergoing stem cell transplant, new research suggests.
Good transplant results for high-risk chronic leukemia
Donated stem cell transplants may benefit patients with chronic lymphocytic leukemia, regardless of their genetic profile, say experts.
Gene clue suggests novel leukemia therapy
Scientists have identified a new trigger for an aggressive form of leukemia.
Sickle cell patients need help to avoid constipation
Children's hospitals are not following the guidelines on preventing constipation in sickle cell patients, research has found.
Increased rate of lethal blood clot in black patients
Outcomes for venous thromboembolism vary between black and white patients, new research indicates.
Channel: msnbc.com: Health
Caterers dish up more cases of food poisoning

Doug Ness was sick for eight days with food poisoning after eating tainted taco meat at a catered wedding last year. His wife, Sara Weigel, who was pregnant at the time, didn't eat the meat and stayed well.New figures from the federal Centers for Disease Control and Prevention show that illnesses from reported outbreaks of food poisoning linked to catering outpace those from restaurants or home cooking.


Drug-resistant strain of E. coli emerges in U.S.
A new, virulent and drug-resistant strain of E. coli bacteria is infecting people in the United States and posing a significant public health threat, doctors reported on Friday.
New flu vaccine protects against H1N1, too
You'll only need a single shot of influenza vaccine this year to protect against three strains of the flu, including the H1N1 virus that sparked the 2009 pandemic.
FDA lifts hold on embryonic stem cell trial
Regulators on Friday gave the all-clear to a clinical trial that will test embryonic stem cells as a treatment for spinal cord injury, potentially the first time embryonic stem cells are tested on humans.
Women's hormone cream can screw up your kids, pets
The hug of a middle-aged woman might affect nearby kids and pets in alarming ways -- and it has nothing to do with menopause mood swings.
Law creates paperwork fiasco for businesses
The House rejected an effort to repeal part of the new health care law that requires millions of businesses to file tax forms for every vendor that sells them more than $600 in goods.
No help for unemployed buying COBRA coverage?

Dose of reality: A provision in federal law called COBRA allows certain people who lose their jobs to keep their employer-provided health insurance coverage, if they pay for it.Dose of reality: A provision in federal law called COBRA allows certain people who lose their jobs to keep their employer-provided health insurance coverage, if they pay for it.


Enjoy your vacation ? even after you get back
Too often, great vacations become distant memories just days after you return. New research suggests some ways to hold on to the feeling.
Daydreams really can take you far away
Just how distracting daydreams can be depends on where exactly your wandering mind takes you, a new study suggests.
Doctors: Transplant advance in windpipe cancer
Doctors have successfully transplanted windpipes into two cancer patients in an innovative procedure that uses stem cells to allow a donated trachea to regenerate tissue and create an organ biologically close to the original, they said Friday.
Channel: Medscape Hematology-Oncology Headlines
Dr. Janet Rowley: Pioneer of Cancer Genetics Still Bikes to Work at Age 85 Years
Trail-blazing researcher adds yet another honor to her stellar career, proving that women can indeed have it all.
Medscape Medical News
After Complete Remission of Testicular Cancer, What Next?
For patients with testicular cancer in complete remission, is a postchemotherapy retroperitoneal lymph node dissection needed? Dr. Howard Hochster reports on a study that answers this question.
Medscape Hematology-Oncology
Do TNF Blockers Increase Cancer Risk in Children?
Cancer cases reported in children treated with TNF blockers were confounded by underlying illnesses and concomitant use of immunosuppressants.
Medscape Medical News
African Ancestry Linked to Triple-Negative Breast Cancer
The FDA has approved glycopyrrolate oral solution for the treatment of patients aged 3 to 16 years with chronic severe drooling associated with neurologic conditions, such as cerebral palsy.
Medscape Medical News
New UK Cancer Drugs Fund Moved Forward, As Report Shows UK Lags Behind in Cancer Drug Use
The UK government has moved forward plans to start its new Cancer Drug Fund as a government report shows that cancer drug use lags behind that of other countries.
Medscape Medical News
Breast Density Accounts for Most of Reduced Mammogram Sensitivity in Younger Women
Tumor-doubling time plays a less important role in women in their 40s, study results suggest.
Medscape Medical News
Problems With DCIS Misdiagnosis: When Cancer Is Not Cancer
Scary and emotional media reports about misdiagnosis and overtreatment of DCIS may keep women from getting recommended screening. Is it time for DCIS to be revisited?
Medscape Medical News
Test Zeroes in on Imatinib-Resistant Cells From Patients With CML
Biosensor is both sensitive and specific for the BCR-ABL kinase.
Medscape Medical News
Human Papillomavirus Vaccine May Offer Prolonged Protection Against Genital Warts and Low-Grade Precancerous Growths
In 2 randomized controlled trials, human papillomavirus vaccine gave prolonged protection against genital warts and low-grade precancerous growths.
Medscape Medical News
Clinical Trials: A WEIRD and Cautionary Tale
A recent anthropology study prompts Dr. Kathy Miller to question the practice of generalizing clinical trial results achieved in a subset of patients to a wider population.
Medscape Hematology-Oncology

 

  
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