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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
Many parents skip booster seats for carpools

You set out with a crew from the birthday party, but find you?re a booster short. Do you make sure your own child gets one? Or do you let all the kids use belts only? A new survey found half the parents of 4- to 8-year-olds questioned sometimes let passengers go booster free.You set out with a crew from the birthday party, but find you?re a booster short. Do you make sure your own child gets one? Or do you let all the kids use belts only? A new survey found half the parents of 4- to 8-year-olds questioned sometimes let passengers go booster free.


Senator's stroke shows younger ages susceptible

Sen. Mark Kirk, R-Ill. leaves a Republican caucus on Capitol Hill in Washington last year. When a stroke hits at 52, like what happened to Sen. Kirk, the reaction is an astonished, "But he's so young." The reality is that strokes can happen at any age.When a stroke hits at 52, like what happened to Sen. Mark Kirk of Illinois, the reaction is an astonished, "But he's so young." The reality is that strokes can happen at any age.


Low-fat, schmo-fat. Only the calories count, study claims
People trying to lose weight may swear by specific diet plans calling for strict proportions of fat, carbs and protein, but where the calories come from may not matter as much as simply cutting back on them, according to a study.
Dentist who used paper clips is sentenced
A former Massachusetts dentist has been sent to jail for a year for using paper clips instead of stainless steel posts in root canals.
FDA whistleblowers sue, alleging electronic spying
The Food and Drug Administration electronically spied on whistleblowers who alerted the Obama administration and Congress of alleged misconduct uin the agency, particularly relating to what they claim was the push to approve unsafe and ineffective medical devices, according to a lawsuit filed in federal court.
After teen hockey injuries, safety push gains support

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.


Vets push pets to help with cancer research
Leading Texas veterinarians are mobilizing to enlist pets in the testing of experimental cancer therapies, a potential benefit to not just dogs and cats but people.
Teen eats mainly McNuggets for 15 years

Even if you?ve never had a McNugget, you could be guilty of eating a high sodium diet. Imagine eating almost nothing but salt-filled McDonald?s Chicken McNuggets. For 15 years.Even if you?ve never had a McNugget, you could be guilty of eating a high sodium diet. Imagine eating almost nothing but salt-filled McDonald?s Chicken McNuggets. For 15 years.


Michael J. Fox aims to up recruits in Parkinson's trials

When Linda Morgan was diagnosed with Parkinson?s disease in October 2005, her doctor told her that her symptoms weren?t bad and instructed her to come back in a year. Sit around and wait -- for a year?!When Linda Morgan was diagnosed with Parkinson?s disease in October 2005, her doctor told her that her symptoms weren?t bad and instructed her to come back in a year. Sit around and wait -- for a year?!


Stop 'splurges' from wrecking your weight-loss

Nobody eats perfectly all the time, and it?s fine?totally normal, in fact?to stray from your plan from time to time. Click for more and to join Joy Bauer's 25,000 pound Weight-loss Challenge.Nobody eats perfectly all the time, and it?s fine?totally normal, in fact?to stray from your plan from time to time. Click for more and to join Joy Bauer's 25,000 pound Weight-loss Challenge.


Channel: Medscape Hematology-Oncology Headlines
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
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
Once-Weekly Exenatide Okayed by FDA for T2DM After Long LookOnce-Weekly Exenatide Okayed by FDA for T2DM After Long Look
The FDA approved the once-weekly version of exenatide for type 2 diabetes with a list of required postmarketing studies on the potential for cardiovascular events and medullary thyroid carcinoma.
FDA Approvals
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
Consensus Guidelines: Neoadjuvant Therapy in Breast CancerConsensus Guidelines: Neoadjuvant Therapy in Breast Cancer
Key recommendations of an international consensus on neoadjuvant systemic therapy in primary breast cancer are discussed by Dr. Lidia Schapira.
Medscape Hematology-Oncology
Long-Term Survival Benefits in Colon Cancer With OxaliplatinLong-Term Survival Benefits in Colon Cancer With Oxaliplatin
A capecitabine/oxaliplatin regimen significantly improves survival in stage III colon cancer, compared with 5-fluorouracil/leucovorin, even 7 years after 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

 

 
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