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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
New power plant leukemia link
Campaigners have called for action to protect families living near nuclear power plants after new findings linking them to leukemia among children.
Children will test new leukemia treatment
British hospitals are to test a radical new treatment for children with serious leukemia, it was announced today.
Euro-project to tackle child leukemia
A major European project to tackle a hard-to-treat form of childhood leukemia is being based in Berlin, Germany, it has been announced.
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.
Channel: msnbc.com: Health
Some still dabble in hard drugs after 50

People who occasionally use hard drugs like cocaine, amphetamines and opiates in middle age are more common than anyone might suspect, an Alabama researcher finds.People who occasionally use hard drugs like cocaine, amphetamines and opiates in middle age are more common than anyone might suspect, an Alabama researcher finds.


NYT: Komen funding fracas far from over
When the nation?s pre-eminent breast cancer advocacy group, the Susan G. Komen for the Cure foundation, decided to stop most of its financing of Planned Parenthood in December, Komen?s leaders hoped to quietly distance the foundation from a politically controversial organization that they feared was costing them support and donations, a board member said.
Supporters grapple with fallout over Komen cuts

Fierce controversy over a policy that cut -- then apparently restored -- funding for Planned Parenthood by the Susan G.Fierce controversy over a policy that cut -- then apparently restored -- funding for Planned Parenthood by the Susan G.


Cooked eggs recalled in 34 states for possible listeria
A Minnesota company is recalling cooked eggs distributed in 34 states because of possible listeria contamination.
New secret to resisting junk food: Just put it off

If a forbidden doughnut is tempting you to break your diet, tell yourself you'll have a bite later ? just don't specify when.If a forbidden doughnut is tempting you to break your diet, tell yourself you'll have a bite later ? just don't specify when.


Is social media spreading twitching hysteria?
In the case of nearly 20 teenagers with a twitching disorder in upstate New York, doctors say the symptoms may be spreading faster through the girls' own use of Facebook and other forms of social media.
Maine girl bouncing back after 6-organ transplant

Alannah Shevenell, 9, speaks to a reporter at her home in Hollis, Maine, Thursday, Feb. 2, 2012. Alannah returned home Wednesday afternoon, three months after receiving six new organs in a groundbreaking operation. A 9-year-old Maine girl is home from a Boston hospital healthy, active and with high hopes ? and a new stomach, liver, spleen, small intestine, pancreas, and part of an esophagus to replace the ones that were being choked by a huge tumor.


Malaria death toll possibly twice as high
Malaria may be killing around twice as many people as experts previously thought, and it could also be hitting older children and adults ? long considered the least susceptible ? a new study suggests.
Latest illnesses point to raw milk's popularity

RETRANSMISSION TO CORRECT AMOUNT OF REPORTED CASES IN PENNSYLVANIA TO 31- The Family Cow facility is seen, Friday, Feb. 3, 2012 in Scotland, Pa. Pennsylvania health officials say the number of people stricken with illness after consuming raw milk from the same dairy has risen to 38 in four states. The confirmed cases of campylobacter bacterial infection include 31 people in Pennsylvania, four in Maryland, two in West Virginia, and one in New Jersey. Health officials said Thursday consumers should discard raw milk bought from the Family Cow farm. The farm has voluntarily suspended raw milk production. (AP Photo/Public Opinion, Markell DeLoatch) HERALD-MAIL OUT; THE RECORD HERALD OUT An outbreak of bacterial infections on the East Coast illustrates the popularity of raw, unpasteurized milk despite strong warnings from public health officials about the potential danger.


What to do if you take recalled birth control pills

If you?ve been taking the birth control pills that were recalled Wednesday, there are some simple steps you can take to protect yourself against an unwanted pregnancy.If you?ve been taking the birth control pills that were recalled Wednesday, there are some simple steps you can take to protect yourself against an unwanted pregnancy.
Channel: Medscape Hematology-Oncology Headlines
World Cancer Day Emphasizes PreventionWorld Cancer Day Emphasizes Prevention
World Cancer Day 2012 will focus on preventing cancer and emphasize that up to one third of common cancers can be prevented by lifestyle changes.
Medscape Medical News
Lawmaker Calls for Bipartisan Support for Cancer ResearchLawmaker Calls for Bipartisan Support for Cancer Research
According to one researcher, cancer is having its AZT moment.
Medscape Medical News
Abiraterone for Prostate Cancer Gets a 'No' in the UKAbiraterone for Prostate Cancer Gets a 'No' in the UK
The news has sparked outrage because the drug was developed in the United Kingdom in research funded by public donations.
Medscape Medical News
Drug Shortages Are Speeding Cancer Deaths, Survey SaysDrug Shortages Are Speeding Cancer Deaths, Survey Says
A survey of American oncologists indicates that drug shortages are not a benign commercial problem.
Medscape Medical News
2012 Genitourinary Cancers Symposium (GUCS)2012 Genitourinary Cancers Symposium (GUCS)
Read clinically focused news coverage of key developments from the meeting.
Medscape Hematology-Oncology
Hyperbaric O2 Helps Most Chronic Radiation Injuries: StudyHyperbaric O2 Helps Most Chronic Radiation Injuries: Study
Hyperbaric oxygen improves most cases of chronic radiation tissue injury, according to a large single-center report.
Reuters Health Information
FDA Approves Vismodegib for Advanced Basal Cell CarcinomaFDA Approves Vismodegib for Advanced Basal Cell Carcinoma
The FDA has approved vismodegib for the treatment of locally advanced or metastatic basal cell carcinoma.
FDA Approvals
Bevacizumab: Important Drug for NSCLCBevacizumab: Important Drug for NSCLC
Dr. Mark Kris highlights the therapeutic benefits -- and toxicities -- associated with bevacizumab use in patients with non-small cell lung cancer.
Medscape Hematology-Oncology
Is HIFU Ever a 'Reasonable' Option in Prostate Cancer?Is HIFU Ever a 'Reasonable' Option in Prostate Cancer?
Disappointing study results raise questions about the efficacy and safety of high-intensity focused ultrasound (HIFU) in localized, recurring prostate cancer, says Dr. Gerald Chodak.
Medscape Urology
CD4 Levels Predict Response to Laryngeal Cancer TherapyCD4 Levels Predict Response to Laryngeal Cancer Therapy
Laryngeal cancer patients with increased CD4 levels showed better survival rates and response to induction chemotherapy.
Medscape Medical News

 

  
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