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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

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Channel: BloodMed.com News
Fatty acids vital for leukemia cells
Scientists have found that leukemia cells rely partly on fatty acids in order to survive.
New source of stem cells from fat tissue?
Hematopoietic stem cells derived from fat tissue may prove to be a viable alternative to cells taken from bone marrow.
Australian treatment may go global
A hemophilia treatment that is standard in Australia may become available world-wide following new trials.
Guidelines to cut hospital blood clot deaths
British regulators have released new guidelines on preventing blood clots in hospital patients.
Legislators consider blood filtration for vCJD
All blood transfused in the UK may have to be filtered for the prion responsible for variant Creutzfeldt-Jakob Disease (vCJD).
BMT may be better than stem cell treatment
Blood stem cell transplantation may not be as good as bone marrow at treating leukemia, researchers reported last night.
Immune suppression lowers virus impact
Scientists have identified a potential way to help the body fight a virus that can trigger leukemia.
Hope for new therapies for aggressive B-cell lymphoma
Genetic findings about non-Hodgkin's lymphoma may help the development of new treatments for a common and aggressive form of the disease, researchers say.
Rituximab for CLL clears fresh hurdle
Scotland in the UK has become one of the last places to approve the drug rituximab for first-line chronic lymphocytic leukemia, it has been announced.
New classification of acute leukemia patients
Researchers have identified new influences on leukemia cells that are linked to a patient's response to treatment.
Channel: msnbc.com: Health
Newborn blood used in research angers parents
A critical safety net for babies ? that heelprick of blood taken from every newborn in the U.S. ? is facing an ethics attack.
Beer may be good for your bones

While researchers don't recommend gulping beer to meet your silicon intake needs, a new study shows the potential health benefits of a cold brew.If you downed one too many while watching the Super Bowl, here's at least one reason to hold your head high: Drinking beer can be good for your health.


Study links sugary soda to pancreas cancer
People who drink two or more sweetened soft drinks a week have a much higher risk of pancreatic cancer, an unusual but deadly cancer, researchers reported on Monday.
Religious folks may not be healthier, after all
Attending religious services or having spiritual experiences may not protect against heart attacks and strokes, a new study suggests.
Different colors describe happiness, depression

Researchers say anxious and distressed people choose gray shades to describe their mood. Healthy people prefer yellow. Both groups said their favorite color was blue. These are tendencies, not across-the-board preferences. Click on the image for a larger version.Are you in a gray mood today? How about a blue funk? Maybe you're seeing red, because you're green with jealousy. The colors we use to describe emotions may be more useful than you think, according to new research.


Paxil interferes with cancer drug, study shows
The popular antidepressant drug Paxil may interfere with breast cancer treatments, making patients more likely to relapse and die, researchers in Canada reported on Monday.
170 more tons of tainted milk found in China
The discovery has punched a 170-ton hole in China's promises to overhaul its food safety system. Officials say they've found yet another case where large amounts of tainted milk powder from the country's 2008 scandal that should have been destroyed were instead repackaged.
Obama wants school vending machine changes
The Obama administration will ask Congress to improve childhood nutrition by ridding school vending machines of sugary snacks and drinks and giving school lunch and breakfast to more kids.
First lady is tackling childhood obesity
After laying the groundwork for nearly a year, first lady Michelle Obama launches a campaign on Tuesday against childhood obesity that she hopes will change the way millions of Americans eat, exercise, look and feel.
Newsweek: How Botox might keep you from feeling sad
According to a new study, by paralyzing the frown muscles that ordinarily are engaged when we feel sad or angry, Botox short-circuits the emotions themselves.
Channel: Medscape Hematology-Oncology Headlines
Medicare Pay Freeze May Still Leave Physicians in Bad SGR "Fix"
Experts warn that physicians could feel additional financial pain because private insurers often peg their rates to Medicare's.
Medscape Medical News
Change in Medicare Reimbursement for Bladder Cancer Raised Costs Instead of Lowering Them
Changes in Medicare reimbursement meant to cut costs in bladder cancer appear to have the increased them, at least in one academic practice.
Medscape Medical News
Tamoxifen Not Being Used Much for Prevention of Breast Cancer
A survey in the United States shows that very few women are taking tamoxifen to prevent breast cancer, even though the drug can cut risk in half.
Medscape Medical News
A Phase II Study of Pemetrexed as Second-line Chemotherapy for the Treatment of Metastatic Castrate-resistant Prostate Cancer (CRPC); Hoosier Oncology Group GU03-67
Investigators examined the safety and efficacy of pemetrexed in patients with post-docetaxel castrate-resistant prostate cancer.
Annals of Oncology
HHS Expands National Disaster Medical System in Haiti
The DHHS has activated additional components of the National Disaster Medical System to help US hospitals provide care to critically ill survivors of the Haiti earthquake.
Medscape Medical News
Bevacizumab: When Is It Contraindicated in NSCLC Patients?
Patient selection for bevacizumab therapy has changed since its FDA approval. In this video blog, Dr. Mark Kris addresses the absolute and relative contraindications to the use of this drug.
Medscape Hematology-Oncology
NIH Consensus Panel Seeks to Bolster Colorectal Cancer Screening
In terms of the participation of eligible adults, screening for colorectal cancer lags behind screening for some other cancers. A recent conference addressed the issue.
Medscape Medical News
Results of US Health-Risk Surveillance System Reported
Controlling health-risk behaviors and using preventive health-care services can reduce or prevent morbidity and premature mortality from chronic diseases.
Medscape Medical News
Exploring the Link Between Anti-TNF-alpha Therapy in RA and Cancer
Is anti-TNF-alpha therapy in rheumatoid arthritis associated with increased risk for cancer? A large-scale longitudinal Swedish registry study says no.
Medscape Rheumatology
Cell Phones May Be Linked to Increase in Tumors, But Evidence Still Inconclusive
A meta-analysis found some evidence linking the use of cell phones to an increased risk for tumors, especially among long-term users.
Medscape Medical News

 

  
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