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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
Hope to boost immunotherapy
A drug developed in Southampton, UK, could dramatically improve the success of the new immunotherapy treatments used to treat blood cancers.
Allergy transmitted via donated blood
A new case study suggests that food allergies can be "caught" via blood transfusions.
Insight into anti-cancer drug role
Scientists have made discoveries about vital proteins that could help improve the safety of cancer treatments.
Marker may predict leukemia treatment outcome
A newly-identified biological marker may help predict which patients with chronic myelomonocytic leukemia will respond well to treatment, according to a new study.
Drug hope for rare leukemia
A new form of treatment is being developed to tackle a rare type of acute leukemia, predominantly affecting children.
Medication warning for heart attack survivors
Heart attack patients who are on anti-blood clotting drugs should not be given nonsteroidal anti-inflammatory drugs, researchers have warned.
Key blood cell enzyme discovered
An enzyme in hematopoietic stem cells is central to their healthy periods of inactivity, researchers have reported.
Sickle cell risks in pregnancy
Pregnant women with a severe form of sickle cell disease are six times more likely to die during or following pregnancy than women without the condition, the first research of its kind has revealed.
BRCA1 link to chronic myeloid leukemia
People with chronic myeloid leukemia have the protein BRCA1 missing from their leukemia cells, even if they carry the non-mutated gene responsible for the production of the protein, a Polish/US study has found.
Older transfused blood is safe
Transfusions with older red blood cells may be equally as beneficial for critically ill adults as transfusions with fresh blood, a new study has found.
Channel: NBC News Health
Physicians to Columbia: Dump Dr. Oz for 'Quack Treatments'
Ten physicians are demanding Columbia University to boot TV star Dr. Mehmet Oz whom they deem guilty of misleading and endangering the public.






Indiana HIV Outbreak Has Now Infected 130
An HIV outbreak in Indiana related dirty drug needles has increased by 24 cases, all attributed to enhanced testing, state officials said Friday.






Disneyland Measles Outbreak is Declared Over
California health authorities declared an end to a measles outbreak that started at Disneyland and triggered a national debate about vaccinations.






Isolated Tribes' Gut Bacteria Hold Biological Surprises
The assortments of bacteria that live within the intestines of isolated tribes are far more diverse than the microbes found in the guts of Americans.
Sofia Vergara Can't Destroy Her Embryos: Bioethicist
Will the embryos be destroyed if Sofia Vergara wants them to be? Not a chance. No court will permit it unless Nick Loeb agrees, a bioethicists says.






Photo of Boy's Scars Goes Viral and Lifts His Spirits
It was Carter's 12th surgery in 7 years due to a congenital heart condition, but this time the scars left behind seemed too much to bear.






Fake Dentist Performed Discount Root Canals: Officials
Valbona Yzeiraj, 45, of White Plains, New York, was arrested Thursday following a grand jury indictment earlier this month.






Sleep Apnea May Speed Memory Loss, Alzheimer's Onset: Study
Sleep apnea may hasten memory declines, leading to earlier diagnoses of mild cognitive impairment and Alzheimer's, suggests a study out Thursday.






E-cig Use Spikes as Traditional Smoking Falls Among U.S. Youth
E-cigarette use among middle and high school students tripled in 2014 while cigarette use fell to record lows, health officials reported Thursday.






Disney-linked Measles Outbreak Soon to be Over in California
A measles outbreak that began at Disneyland in December is waning.






Channel: Medscape Hematology-Oncology Headlines
EGFR Testing Not Done in 25% of Lung Cancer PatientsEGFR Testing Not Done in 25% of Lung Cancer Patients
Not all patients with advanced NSCLC undergo testing for the EGFR mutation, and for some patients who do undergo testing, therapy is initiated before the results are received.
Medscape Medical News
Medullary Thyroid Cancer: More Progress With TKIsMedullary Thyroid Cancer: More Progress With TKIs
Dr Manisha Shah talks about the importance of genetic testing in medullary thyroid carcinoma and highlights management guidelines for this rare head and neck cancer.
Medscape Oncology
Does Obesity Explain High Prostate Cancer Risk in Black Men?Does Obesity Explain High Prostate Cancer Risk in Black Men?
Black men who are obese are at increased risk for prostate cancer; as body mass index increases, this risk nearly quadruples.
Medscape Medical News
Pay-for-Delay Drug Deals: Do They Hurt or Help Patients?Pay-for-Delay Drug Deals: Do They Hurt or Help Patients?
Do pay-for-delay deals increase costs and delay generic drug entry into the market, or do they actually lower costs and make generics available sooner?
Medscape Medical News
Muscle-Building Supplements Linked to Testicular CancerMuscle-Building Supplements Linked to Testicular Cancer
A case-control study suggests that men who use muscle-building supplements are at 65% increased risk for testicular cancer.
Medscape Medical News
Precision Medicine Needs 'Precision Genomics'Precision Medicine Needs 'Precision Genomics'
In half of all cancer patients, tumor-only gene sequencing is not enough to guide therapeutic decisions on the use of precision cancer agents.
Medscape Medical News
IMPRESS Trial: Navigating the Switch to Chemo From a TKIIMPRESS Trial: Navigating the Switch to Chemo From a TKI
Dr Mark Kris discusses the details of the IMPRESS trial, which assessed the effect of discontinuing gefitinib in patients with EGFR-mutant lung cancer who have developed resistance to the drug.
Medscape Oncology
No Adjuvant Oxaliplatin for Elderly CRC PatientsNo Adjuvant Oxaliplatin for Elderly CRC Patients
Consensus guidelines offer distinct recommendations for adjuvant and palliative treatments in elderly patients with colorectal cancer, as discussed by Dr David Kerr.
Medscape Oncology
Aspirin Does Not Reduce Mortality in Prostate CancerAspirin Does Not Reduce Mortality in Prostate Cancer
Aspirin use was not associated with a reduction in the risk for prostate cancer death in a large study of men in the United Kingdom.
Medscape Medical News
Normal Erection After Prostatectomy Is 'Rare'Normal Erection After Prostatectomy Is 'Rare'
A novel approach to assessing erectile function yielded startling findings.
Medscape Medical News

 

 
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