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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
Child cancer genes cracked
A European team of researchers has been unravelling the secrets of an incurable form of childhood leukemia.
Hope to improve bone marrow transplants
Scientists say they may have identified chemicals that could dramatically improve the success of bone marrow transplants.
Genetic cascade behind AML revealed
A single mutant gene is able to activate another 100 genes to cause acute myeloid leukemia, British researchers have found.
New metabolism link to lymphoma
Scientists have found a new link between abnormal energy production in cells and a dangerous form of lymphoma.
Immunotherapy success for myeloma
Genetically modified immune system cells have successfully been used to treat multiple myeloma, researchers reported last night.
Mice genes explain human stem cells
Scientists have made new discoveries on the way in which genes control the number and function of blood stem cells.
Child leukaemia drug is "exciting"
A new leukaemia drug is likely to be an effective treatment for children, Australian researchers have reported.
Germans study blood creation
German researchers have offered new insights into how the body makes blood - and how the process could be accelerated.
Transfusion costs can be cut - study
Doctors may be able to reduce the amount of blood transfusion used to care for patients with upper gastrointestinal bleeding, according to a major new British study.
T-cell prolymphocytic leukemia hope
Good results have been seen for an experimental new treatment approach for T-cell prolymphocytic leukemia, a rare and lethal form of leukemia.
Channel: NBC News Health
Doctor Sexually Assaulted Patients, Took Naked Photos
Jeffrey Joel Abrams, 68, pleaded guilty to 12 counts and could could face probation to more than 25 years in prison when he is sentenced in September.

Girl, 13, Learns to 'Just Breathe' After Sudden OCD
Thirteen-year old Megan remembers when all she could think about was washing her hands.

Legionnaires' Disease Could Be Linked to Climate Change
The number of cases of the disease is on the rise in the United States, and researchers say the increase could be partly a result of climate change.

Game-Changing Ebola Vaccine Could Stop Virus
An experimental vaccine tested on thousands of people in Guinea exposed to Ebola seems to work, according to early study results.

Lawsuit Accuses CVS of Overcharging for Generic Drugs
CVS deliberately overcharged some pharmacy customers for generic drugs by submitting claims to their insurance companies at inflated prices, according to a lawsuit filed Thursday in federal court.

Now Is the Time to Get Kids on a School Sleep Schedule
Experts say it takes a while to get children accustomed to the school sleep routine, so now is the time to start. NBC's Erika Edwards reports.

2 Killed, Dozens Sickened by Legionnaires' Outbreak
Thirty-one cases have been reported in south Bronx neighborhoods since July 10, the Health Department said. Two of the people died.

Beat the Heat: How to Stay Safe as Temps Sizzle
Here are some tips to keep your cool and stay safe in the broiling temperatures and stifling humidity affecting millions of Americans this week.

Boy Gets Double Hand Transplant in Surgical First
Zion Harvey, 8, lost his hands to a bacterial infection when he was a toddler.

South Korea Declares Itself Out of MERS Danger
Twelve people remain hospitalized in South Korea for MERS although only one is still testing positive for the MERS virus, the Health Ministry says.

Channel: Medscape Hematology-Oncology Headlines
Immunotherapy in Previously Treated Advanced NSCLCImmunotherapy in Previously Treated Advanced NSCLC
Dr Jack West provides an analysis of practice-changing studies presented at ASCO 2015, with a focus on lung cancer.
Medscape Oncology
Out-of-Pocket Costs More Stressful Than Cancer in TexasOut-of-Pocket Costs More Stressful Than Cancer in Texas
In a study of patients with advanced cancer, many reported that their financial stresses were more severe than their physical and emotional problems.
Medscape Medical News
Lidocaine Eases Pain, Improves Sex in Breast Cancer PatientsLidocaine Eases Pain, Improves Sex in Breast Cancer Patients
Topical lidocaine makes intercourse more comfortable in postmenopausal breast cancer patients with severe dyspareunia.
Medscape Medical News
Novel Drug 'Remarkable' in Tenosynovial Giant Cell TumorNovel Drug 'Remarkable' in Tenosynovial Giant Cell Tumor
A novel drug shows promise in the treatment of a rare tumor that attacks joints and leaves patients disabled and in pain, and is usually treated with surgery.
Medscape Medical News
High Risk for Gastric Cancer in Patients With Gastric LesionsHigh Risk for Gastric Cancer in Patients With Gastric Lesions
Patients who have gastric lesions identified on biopsy have a higher risk for gastric cancer, and the more severe the lesion, the higher the risk.
Medscape Medical News
HPV Persistence Predicts Poor Prognosis in Head/Neck CancerHPV Persistence Predicts Poor Prognosis in Head/Neck Cancer
Persistence of HPV16 in patients with HPV-positive oropharyngeal cancer is associated with a poorer prognosis and disease recurrence.
Medscape Medical News
Febrile Neutropenia Pts Treated Quicker Under New ProtocolFebrile Neutropenia Pts Treated Quicker Under New Protocol
A new treatment pathway reduced time to antibiotic therapy for patients with febrile neutropenia presenting in the emergency department.
Medscape Medical News
Immunotherapy Drugs on the Way for Bladder CancerImmunotherapy Drugs on the Way for Bladder Cancer
The anti-PD-L1 therapy atezolizumab met its primary endpoint in a cohort of patients in a phase 2 study and is one of three agents under investigation
Medscape Medical News
'Clash of Titans' About Novel Radiotherapy for Breast Cancer'Clash of Titans' About Novel Radiotherapy for Breast Cancer
Two camps of radiation oncologists are at war over single-dose radiation therapy for breast cancer administered during surgery, which was the subject of a major clinical trial.
Medscape Medical News
Teva Recalls Six More Lots of Fluorouracil InjectionTeva Recalls Six More Lots of Fluorouracil Injection
The recall of Adrucil is due to the potential presence of particulate matter identified as an aggregate of silicone rubber pieces from a filler diaphragm and fluorouracil crystals.
News Alerts


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