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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
Gene mutations predict AML relapse
New findings suggest that the presence of cancer-related mutations after chemotherapy indicate a raised risk of poor leukemia outcomes.
ICU guidelines published for patients with haematological malignancy
New guidelines seek to improve the care of patients with hematological malignancy who may need critical care.
CML nutrients identified
A new approach to therapy for chronic myelogenous leukemia could tackle dipeptide nutrients that feed the diseased stem cells, researchers have found.
Lymphoma gene therapy barriers studied
Swedish doctors are setting out to document, patient by patient, the problems that a new targeted gene therapy is facing in treating lymphoma.
Which drug for blood clots in cancer?
Patients with cancer may be treated with warfarin for venous thromboembolism, researchers have reported.
Leukemia found in Stone Age
Scientists say they may have uncovered the earliest recorded case of leukemia in a 7,000-year-old skeleton.
Gene tests spell out myeloma prognosis
Testing for genetic factors can help identify patients most at risk from multiple myeloma, British researchers reported last night.
Space test for myeloma
Space technology could be used to help detect cancer of the bone marrow, a European conference heard yesterday.
Teen donors in the shadows
Adolescents who provide bone marrow for siblings need to be "brought out of the shadows," according to a new analysis.
Hope for new hemophilia therapy
A recombinant fusion protein drug that stops bleeding has shown promise for patients with hemophilia A, researchers have reported.
Channel: NBC News Health
FDA Warns on Powdered Caffeine: You're Selling Deadly Doses
One teaspoon delivers as much caffeine as 28 cups of coffee.









Pope Francis Gives Priests Discretion to Forgive Abortion
"I am well aware of the pressure that has led [women] to this decision," the pontiff wrote. "I know that it is an existential and moral ordeal."









A Wider Waist in Middle Age Could Mean Earlier Alzheimer's
New research says people's weight in middle age may influence not just whether they go on to develop Alzheimer's disease, but when.









Sleep Fights Colds, Study Finds
People who regularly sleep six hours or less each night are four times more likely to get a cold than people who sleep an hour longer, a study finds.









College Kids Smoked Pot More than Cigarettes in 2014: Study
College kids smoked marijuana more regularly in 2014 than cigarettes, a survey published Tuesday by researchers at the University of Michigan found.









Give Peanuts to Babies, Pediatricians Advise
Giving peanut products to babies before they're a year old may help prevent allergies from developing later, pediatricians said Monday.









Rare Brain Disease Caused by Cousin of Mad Cow Culprit
A rare, incurable brain disorder that resembles Parkinson's disease is caused by a mutant protein similar to the prions that cause mad cow disease.









'Happy Meals' Bill Could Help Kids, Researchers Say
A proposal that would force New York City's fast food restaurants to make their kids-themed meals healthier might actually have some benefit.









When Should You Have the 'Booze Talk' With Your Kids?
Parents and doctors need to talk to kids about drinking before the children try their first sip, the main pediatricians' group says.









Is Eating Fish Every Day Recommended?
With government guidelines urging everyone to eat fish twice a week for heart and brain benefits, you might wonder: If two days of fish is good, is eating fish every day even better?









Channel: Medscape Hematology-Oncology Headlines
Blood Test Predicts Breast Cancer Relapse 8 Months EarlierBlood Test Predicts Breast Cancer Relapse 8 Months Earlier
A blood test may be able to predict disease recurrence 8 months earlier than scans in women treated with neoadjuvant chemotherapy and surgery. But how soon can we see this in clinical practice?
Medscape Medical News
Nanoknife Ablation Doubles Survival in Pancreatic CancerNanoknife Ablation Doubles Survival in Pancreatic Cancer
In patients with locally advanced pancreatic cancer, irreversible ablation with the Nanoknife system doubles survival time compared with historical controls.
Medscape Medical News
Pomegranate Juice for Prostate Cancer Prevention? Study Says?Pomegranate Juice for Prostate Cancer Prevention? Study Says?
Should clinicians recommend pomegranate juice or extract to men after local therapy for prostate cancer?
Medscape Urology
Oncotype DX Impacts Chemotherapy Decisions in Breast CancerOncotype DX Impacts Chemotherapy Decisions in Breast Cancer
A large cohort study demonstrated that Oncotype DX testing was associated with less frequent chemotherapy use in high-risk patients, but more frequent use in low-risk women.
Medscape Medical News
Effectiveness of Cancer Survivorship Care Plans QuestionedEffectiveness of Cancer Survivorship Care Plans Questioned
Survivorship care plans have been recommended for cancer survivors to improve their quality of care, but a Dutch study questions their benefits.
Medscape Medical News
Pancreatic Cancer: Who Is Likely to Respond to FOLFIRINOXPancreatic Cancer: Who Is Likely to Respond to FOLFIRINOX
The enzyme CES2 may identify patients with pancreatic cancer who are likely to respond to treatment with irinotecan in the FOLFIRINOX regimen.
Medscape Medical News
Daratumumab Activity 'Impressive' in Refractory MyelomaDaratumumab Activity 'Impressive' in Refractory Myeloma
The investigational anti-CD38 monoclonal antibody has demonstrated promising single-agent activity in patients with difficult-to-treat multiple myeloma.
Medscape Medical News
E-Cigs 95% Less Harmful Than Smoking and Help With CessationE-Cigs 95% Less Harmful Than Smoking and Help With Cessation
A UK report says that e-cigarettes are safer than tobacco, have potential as a smoking-cessation aid, and are not a gateway for teens to take up smoking.
Medscape Medical News
Treating Cancer Patients: 'Letting It Hurt the Proper Amount'Treating Cancer Patients: 'Letting It Hurt the Proper Amount'
A hematology-oncology fellow reflects on the difficulty of finding the right amount of empathy when treating cancer patients.
Medscape Oncology
Stiffer Matrix in Fat Tissue May Promote Breast Cancer RiskStiffer Matrix in Fat Tissue May Promote Breast Cancer Risk
Obesity increases the risk for breast and other cancers. New research shows that a stiffer extracellular matrix within the adipose tissue is involved.
Medscape Medical News

 

 
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