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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
Immune cell uncovered that may protect against sepsis
A newly-identified kind of immune cell may help to protect against sepsis, new US research has claimed.
Chemotherapy behind DNA damage that causes leukemia relapse
DNA damage that leads to relapse in some leukemia patients may be caused by the chemotherapy drugs that fight the disease, researchers have reported.
Enzyme study reveals cancer mechanism
An unexpected discovery could lead to new opportunities for the use of anti-cancer drugs, British researchers say.
New approach to combat aggressive leukemia
Strategies for treating an aggressive form of leukemia may be near after a cancer sequencing project identified possible therapies associated with a different subtype of the disease.
New drug could improve multiple myeloma therapy
Scientists are hopeful that they have found a new drug to treat multiple myeloma.
Support for preventive approach to hemophilia A treatment
New research indicates that preventative treatment for hemophilia A can avoid excessive bleeding and improve quality of life.
Venous thrombosis carries long-term risk
People who have experienced a venous thrombosis have a raised risk of death of the following eight years, according to a new study.
Lymphoma 'twinning' scheme a success
Doctors in Boston, USA, who "twinned" with Rwandan doctors in a unique long-distance program to offer specialist cancer care for children in the African country, have spoken of its success.
Gene variation behind treatment resistance for some leukemia patients
A gene variation that is carried by 20 per cent of the population can affect how patients with a rare type of blood cancer respond to treatment, according to British scientists.
Fish oil may hold key to leukemia treatment
A compound produced from fish oil has successfully killed leukemia stem cells in a study that could pave the way for new treatments.
Channel: msnbc.com: Health
After teen hockey injuries, can rough sport become safer?

Two tragic spine injuries in Minnesota high school hockey games in the last month have sparked debate among parents, officials, and fans over how the rough sport can be made safer.Two tragic spine injuries in Minnesota high school hockey games in the last month have sparked debate among parents, officials, and fans over how the rough sport can be made safer.


Flu faux pas: The etiquette of being sick

You know "that guy," the one who still goes to work and sees friends even when he's sick? Anna Post of the Emily Post Institute has some tips for him. Find out the "do's" and "don't" of being sick.You know "that guy," the one who still goes to work and sees friends even when he's sick? Anna Post of the Emily Post Institute has some tips for him. Find out the "do's" and "don't" of being sick.


Non-stop hiccups only clue to man's heart attack
In an extremely rare and highly unusual case, constant hiccups turned out to be a 68-year-old man's only symptom of a heart attack. Cases like this are so few and far between that it was last known to occur more than 50 years ago.
Co-nursing: Are four breasts better than two?

Did you ever wish, during those bleary nighttime feedings, for an extra set of boobs to shoulder the burden? Dorea Vierling-Claassen got that wish, when her wife, Angela Vierling-Claassen, agreed to co-nurse.Did you ever wish, during those bleary nighttime feedings, for an extra set of boobs to shoulder the burden? Dorea Vierling-Claassen got that wish, when her wife, Angela Vierling-Claassen, agreed to co-nurse.


Weight-loss Challenge: It's the home stretch!

With a few more days to go and a few more pounds to lose in the challenge, readers share their motivation and what's working for them.With a few more days to go and a few more pounds to lose in the challenge, readers share their motivation and what's working for them.


Erin Brockovich tackles teen girls' mystery illness

More teens have developed the puzzling symptoms of tics and verbal outbursts, which one doctor has diagnosed as a rare type of mass hysteria. Now environmental activist Erin Brockovich is investigating a possible link with a 40-year-old chemical spill.More teens have developed the puzzling symptoms of tics and verbal outbursts, which one doctor has diagnosed as a rare type of mass hysteria. Now environmental activist Erin Brockovich is investigating a possible link with a 40-year-old chemical spill.


FDA detains some OJ from Brazil for fungicide
U.S. health regulators said on Friday that they had detained three shipments of Brazilian orange juice, and six from Canada, that tested positive for the fungicide carbendazim.
Spike in deaths blamed on 2003 NYC blackout
Have your mayo and cut calories, too

Condiments are a source of ?hidden? calories because people often forget to account for them when tracking their food intake. Click for more and to join Joy Bauer's 25,000 pound Weight-loss Challenge.Condiments are a source of ?hidden? calories because people often forget to account for them when tracking their food intake. Click for more and to join Joy Bauer's 25,000 pound Weight-loss Challenge.


More men than women have oral cancer virus
About 7 percent of adults and teens in the United States are orally infected with the human papillomavirus, or HPV, a new study says.
Channel: Medscape Hematology-Oncology Headlines
FDA Approves Axitinib for Advanced Renal Cell CancerFDA Approves Axitinib for Advanced Renal Cell Cancer
The FDA has approved axitinib for patients with advanced disease that has progressed after receiving first-line therapy.
FDA Approvals
New Lung Cancer Assay Ready for Prime TimeNew Lung Cancer Assay Ready for Prime Time
The assay outperformed clinical criteria in identifying patients with early-stage nonsmall-cell lung cancer who were at high risk and who could benefit from additional treatment.
Medscape Medical News
2012 Multidisciplinary Head and Neck Cancer Symposium (MHNCS)2012 Multidisciplinary Head and Neck Cancer Symposium (MHNCS)
Read clinically focused news coverage of key developments from the meeting.
Medscape Hematology-Oncology
US Cancer Screenings Not Meeting Goals, Says CDCUS Cancer Screenings Not Meeting Goals, Says CDC
Testing for cancer of the breast, cervix, and colon/rectum is recommended.
Medscape Medical News
Healthcare Gone Missing: The State of the Union AddressHealthcare Gone Missing: The State of the Union Address
Henry R. Black, MD, and Roxana Mehran, MD, talked with Medscape after the 2012 State of the Union address about why healthcare was missing and what that portends.
Medscape Cardiology
Bevacizumab Shows Benefit in Nonmetastatic Breast CancerBevacizumab Shows Benefit in Nonmetastatic Breast Cancer
Only months after the FDA revoked its metastatic breast cancer indication, the agent improved response in the neoadjuvant setting in 2 trials.
Medscape Medical News
Nonmelanoma Lung Lesions in Melanoma PatientsNonmelanoma Lung Lesions in Melanoma Patients
Melanoma frequently metastasizes to the lungs, but a new study finds a surprisingly high incidence of lung lesions that are not melanoma.
Medscape Medical News
Number of Physicians Employed by Hospitals SnowballingNumber of Physicians Employed by Hospitals Snowballing
Roughly 211,500 physicians were hospital employees in 2010, a 34% increase since 2000. The trend illustrates how medicine is turning the corner from cottage industry to big business.
Medscape Medical News
Breast CT Scanners Skip Compression, Show Cancer in 3DBreast CT Scanners Skip Compression, Show Cancer in 3D
Radiation is not a concern, but FDA approval could be.
Medscape Radiology
After 13 Years, Still No Clear Benefit From PSA ScreeningAfter 13 Years, Still No Clear Benefit From PSA Screening
Dr. Gerald Chodak reviews the latest analysis of data from the Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial, including criticisms of contamination.
Medscape Urology

 

  
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