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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.


Glossary of
PNH Terms




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
AML gene search
Researchers are hoping that a study of a gene linked to leukemia may lead to new treatments.
Biospleen device for sepsis therapy
A new device called a "biospleen" could help to treat people with the life-threatening condition sepsis.
Blood transfusion hope for Ebola care
Blood plasma treatments may have a key role in helping to tackle the Ebola virus epidemic in Africa, the World Health Organization has said.
Enzyme inhibitors for high-risk leukemia
Tyrosine kinase inhibitors may improve outcomes for patients with acute lymphoblastic leukemia, according to new findings.
PET scans boost lymphoma care
Patients treated for follicular lymphoma should be monitored using a kind of PET scanning, researchers say today.
Gene that unleashes leukemia
British researchers are hoping to pinpoint a single gene responsible for a common form of leukemia.
New guideline for sickle cell
A new guideline for managing sickle cell disease recommends use of the drug hydroxyurea and transfusion therapy.
Stored blood stiffens with age, study finds
Blood that has been stored for a long time becomes less elastic and is unable to carry oxygen into the body's tiny microcapillaries,researchers have revealed.
New drug safe for leukemia patients
A whole new approach to treating cancer could open up after a drug trial targeting the mitochondria was found to be safe in leukemia patients, researchers have reported.
New drug for anemia of inflammation
A new treatment may be on the horizon for anemia caused by inflammation.
Channel: NBC News Health
Snacks Hit the Spot Globally -- and Replace Meals
A survey of global snack habits by Nielsen shows nearly half of respondents admit snacking instead of eating meals.

10 Denver-Area Kids Have Strange Muscle Weakness
Ten kids have shown up with a mystifying muscle weakness that may be related to an outbreak of enterovirus D68, doctors said Monday.

Forget Enterovirus: Another Illness Is Killing Kids
Enterovirus may be all over the headlines but there's another virus that kills kids every year that you may not even have heard of. It's called RSV.

Caffeinated Underwear? FTC Says It Lacks Buzz
Bras, girdles and leggings infused with caffeine and sold as weight loss aids were more decaf than espresso, U.S. regulators said on Monday.

'I Have HIV And I Want You to Know It'
In response to a viral essay by one mom explaining why she hides her daughter's HIV+ status, one teen with HIV discusses going public with her status.

Colorado Children Showing Polio-Like Symptoms
The CDC says it?s concerned about kids all suffering from polio-like symptoms, with no clear identification of their illness. NBC?s Hallie Jackson reports.

This Exercise Is the Superfood of Fitness, Experts Say
Fitness experts who stress daily movement over workouts and an active lifestyle over weekends of warrior games says walking is a superstar.

Child With Rare Lung Disease Helps Others
The family of a 4-year-old boy with a rare lung disease helps raise money for research and spread awareness of pulmonary hypertension. KPLC's Britney Glaser reports.

Health Expert: Pumpkins Are Healthy, Pumpkin-Flavored Lattes Aren't
While many foods that contain "pumpkin" are automatically considered to be healthy, some pumpkin-flavored foods may actually be quite the opposite. NBC's Erika Edwards reports.

Best Birth Control for Teens? Hint: Not the Pill
The best birth control to offer teenage women is an implantable rod, followed by an IUD, pediatricians say in new guidance.

Channel: Medscape Hematology-Oncology Headlines
Oncologist Sentenced to 10 Years for Poisoning ColleagueOncologist Sentenced to 10 Years for Poisoning Colleague
A breast cancer specialist was sentenced for aggravated assault after lacing her sex partner's coffee with ethylene glycol. The victim is also an oncologist at the M.D. Anderson Cancer Center.
Medscape Medical News
The Value of Multiplex Genotyping for Lung CancerThe Value of Multiplex Genotyping for Lung Cancer
Dr Mark Kris discusses the development of the Lung Cancer Mutation Consortium, a group of lung cancer specialists who sought to prove the value of multiplex genotyping.
Medscape Oncology
'Impressive' Duration of Response With Nivolumab in Melanoma'Impressive' Duration of Response With Nivolumab in Melanoma
Preliminary data from the first phase 3 trial with the immunotherapy nivolumab show that most patients who respond continue to respond (up to 10 months).
Medscape Medical News
In NSCLC After Progression on First-line TKI, What Next?In NSCLC After Progression on First-line TKI, What Next?
Once a patient with EGFR-positive non-small cell lung cancer stops responding to first-line tyrosine kinase inhibitor, how should therapy proceed?
Medscape Medical News
'Unprecedented' Survival of 15 Months Seen in CLEOPATRA'Unprecedented' Survival of 15 Months Seen in CLEOPATRA
Pertuzumab plus trastuzumab adds a 15-month survival benefit in HER2-positive metastatic breast cancer.
Medscape Medical News
Anamorelin: First Ever Drug for Cancer Cachexia?Anamorelin: First Ever Drug for Cancer Cachexia?
The drug, a mimetic of the so called 'hunger hormone' ghrelin, significantly increased lean body mass and body weight in cancer patients with cachexia.
Medscape Medical News
Chemo and Radiotherapy Safe for Fetus During Later PregnancyChemo and Radiotherapy Safe for Fetus During Later Pregnancy
Treatment can usually be delivered to pregnant cancer patients without harming the fetus and without having to terminate the pregnancy.
Medscape Medical News
Afatinib Shows Modest Benefit in Head and Neck CancerAfatinib Shows Modest Benefit in Head and Neck Cancer
Afatinib, already approved for lung cancer, showed an improvement in progression-free, but not overall, survival, in head and neck cancer.
Medscape Medical News
Young European Oncologists Report High Levels of BurnoutYoung European Oncologists Report High Levels of Burnout
A new survey reports that more than 70% of young oncologists in Europe are feeling the effects of burnout.
Medscape Medical News
Guidance to Help Cancer Survivors Avoid Cardiac DeathGuidance to Help Cancer Survivors Avoid Cardiac Death
Echocardiography emerged as a cornerstone of monitoring and reducing possible heart damage in cancer patients treated with chemotherapy.
Medscape Medical News


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