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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
Exhausted T-cells hope for autoimmune diseases
T cell "exhaustion" could prove to be a key indicator of the prospects of patients who develop auto-immune disease, British researchers say.
Artificial blood trials "in two years"
Britain is set to start testing artificial blood on volunteers within two years, it was announced yesterday.
Europe to get myeloma drug
A radical new drug for multiple myeloma is set to get approval for use in Europe, it has been announced.
Mental trauma of embolism survivors
Many young patients who experience life-threatening blood clots go on to need treatment with psychiatric drugs, a conference heard yesterday.
Abdominal blood clots signal cancer risk
People who develop blood clots in an abdominal vein may well be suffering from undiagnosed cancer, doctors have warned.
Cold homes aggravate sickle cell problems
Health services should find ways of ensuring patients with sickle cell disease live in warm homes, researchers have found.
Call for blood donors
The world needs to step up efforts to recruit voluntary blood donors to help tackle problems such as maternal deaths, according to health officials.
Blood link to brain health
Blood type may be a key clue to brain health, British researchers have found.
Drug may treat acute myeloid leukemia - conference
A new kinase inhibitor may have the ability to treat acute myeloid leukemia, a major conference has heard.
Follow-up scans aid lymphoma care
Positron emission tomography and computed tomography could potentially provide effective follow-up treatment for people who have been treated for aggressive non-Hodgkin lymphoma , according to a new US study.
Channel: NBC News Health
VA Hospital That Treated Civil War Vets Faces Closure
Wounded warriors from Civil War battles at Antietam and Gettysburg came to the Battle Mountain Sanitarium for treatment.









Washington Woman Is First U.S. Measles Death in 12 Years
A woman living in rural northwestern Washington has died from measles, state health officials said Thursday. It's the first U.S. death in 12 years.









U.S. Averages a Mass Killing Every Two Weeks, Study Finds
Police have said so for years and now scientists have measured the effect: Mass shootings and school attacks do inspire copycats.









90% of Americans Eat Too Much Salt, Study Finds
Consuming too much sodium can be a risk factor for heart problems, and new federal data shows more than 90% of Americans eat too much.









Scientists Excited About This New AIDS Vaccine
"I think it is quite promising," said Mitchell Warren of the HIV vaccine and treatment advocacy group AVAC.









More People Dying From Cancer, But Risk is Lower
More Americans are dying from cancer, but it's because the population is growing, researchers reported Thursday. The actual risk is falling.









FDA Taking a Closer Look at Codeine for Kids
The Food and Drug Administration says it's taking a closer look at the safety of giving codeine to kids as a cough suppressant.









Alzheimer's Study Finds Caregiver Link
Research shows caregivers of someone with dementia are at a sixfold higher risk of the same fate. KPLC's Britney Glaser reports.









Kids With ADHD Getting Wrong Drugs, Study Finds
Kids with ADHD may be getting strong antipsychotic medications meant to treat diseases such as schizophrenia and bipolar disorder, a new study finds.









Study Could Explain Flu Vaccine Link to Narcolepsy
Scientists trying to explain a rare side-effect of one flu vaccine may have stumbled onto what causes narcolepsy.









Channel: Medscape Hematology-Oncology Headlines
US Cancer Death Rate Down, But Number of Deaths RisingUS Cancer Death Rate Down, But Number of Deaths Rising
With the aging population and other demographics, the number of cancer deaths is increasing in the United States, even though the cancer-related mortality rate has declined.
Medscape Medical News
Success of Platinum Desensitization 'Depends on the Agent'Success of Platinum Desensitization 'Depends on the Agent'
Cancer patients receiving oxaliplatin are more likely to experience hypersensitivity reactions during desensitization than those given carboplatin.
Medscape Medical News
Immunotherapy May Boost Chemo Outcomes in Pancreatic CancerImmunotherapy May Boost Chemo Outcomes in Pancreatic Cancer
A novel suspension of Mycobacterium obuense might extend survival and improve quality of life in patients with pancreatic cancer by acting as a primer for chemotherapy.
Medscape Medical News
Which Diet Confers the Most Benefit in Prostate Cancer?Which Diet Confers the Most Benefit in Prostate Cancer?
Gerald Chodak comments on a study looking at the diets of men diagnosed with prostate cancer. Can diet lower the mortality rate of men with prostate cancer?
Medscape Urology
17th World Congress on Gastrointestinal Cancer (WCGC)17th World Congress on Gastrointestinal Cancer (WCGC)
Read clinically focused news coverage of key developments from WCGC 2015.
Medscape Oncology
Excellent Outcomes With Partial-Breast IrradiationExcellent Outcomes With Partial-Breast Irradiation
An accelerated 1-week regimen of partial-breast irradiation after breast-conserving surgery looks to be as effective as whole-breast irradiation.
Medscape Medical News
Vitamin D Augments Effect of Weight Loss in Older Women Vitamin D Augments Effect of Weight Loss in Older Women
Vitamin D supplementation augments the benefits of weight loss on systemic inflammation linked to cancer and chronic disease.
Medscape Medical News
Learning the Craft: 'Medicine Is Not Just a Job'Learning the Craft: 'Medicine Is Not Just a Job'
A young doctor reflects on his choice to go into medicine.
Medscape Oncology
Spit-and-Stick Test Could Be Biomarker for HNSCCSpit-and-Stick Test Could Be Biomarker for HNSCC
A much-needed biomarker for head and neck squamous cell carcinoma (HNSCC) that assesses tumor DNA shed in plasma and saliva is in the works.
Medscape Medical News
Citrus Fruit and Melanoma: Is There Any Link?Citrus Fruit and Melanoma: Is There Any Link?
Citrus fruits contain photoactive compounds that could increase risk for melanoma, say investigators who saw an association between citrus intake and skin cancer risk.
Medscape Medical News

 

 
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