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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
Two genes closely linked to cancer
New discoveries have been made on the genetic causes of certain forms of cancer.
HIV only hiding, not cured
HIV may be able to hide for years in people who seem to be cured of infection, according to a new study.
Calcium tests to detect cancer?
Blood tests for high calcium levels could be used to detect a range of cancers at an early stage, researchers have revealed.
New hope for myeloma drug
British scientists may have found a drug that could tackle multiple myeloma without causing serious side-effects, it was announced last night.
SCID gene therapy 'effective and safe'
A new gene therapy for "bubble boy" disease appears to be both effective and safe, an international clinical trial has found.
Blood cell origins uncovered
New findings are challenging long-held beliefs about the origins of blood cells in the human body.
Neonatal Haematology
Video presentation by Irene Roberts, Professor of Paediatric Haematology, University of Oxford, John Radcliffe Hospital
Platelets affected by their environment
Scientists have found that platelets alter their clotting action depending on the environment they find themselves in.
Breast implant link to rare cancer
Breast implants may trigger the development of a rare kind of cancer in some women, researchers have found.
HIV epidemic began in 20s
The modern HIV epidemic began in Kinshasa, now the capital of the Democratic Republic of Congo, in the early 1920s, according to a new study published.
Channel: NBC News Health
Ebola Nurse Quarantined in New Jersey Slams Rules
Kaci Hickox, who tested negative for Ebola but is under quarantine in New Jersey, said new rules will discourage aid workers from helping in Africa.






Ebola Worker Tests Negative, Stays in Quarantine in N.J.
A healthcare worker who treated Ebola victims and was placed in isolation in New Jersey has tested negative for the virus but will remain quarantined.






Ebola Worker Tests Negative, Stays in Quarintine in N.J.
A healthcare worker who treated Ebola victims and was placed in isolation in New Jersey has tested negative for the virus but will remain quarantined.






Girl Shaves Head to Support 5-year-old Sister in Remission
This 7-year-old came on the TODAY show with her little sister, who had cancer, and vowed to shave her own head in support of children with cancer.






Worker Who Treated Ebola Hospitalized in N.J., Has Fever
The healthcare worker was placed in quarantine at a Newark airport upon returning from treating Ebola patients in Africa, and later developed a fever.






Worker Who Treated Ebola Hospitalized in NJ, Has Fever
The healthcare worker was placed in quarantine at a Newark airport upon returning from treating Ebola in Africa, and later developed a fever.






Worker Who Treated Ebola in Isolation With Fever in NJ
The healthcare worker was placed in quarantine at a Newark airport upon returning from treating Ebola in Africa, and later developed a fever.






Brittany Maynard's Bucket List Beckons Her to Grand Canyon
Brittany Maynard has chosen a "death with dignity," while hoping terminal brain cancer would hold off long enough for her to see a special place.






Bioethicist: Hotels, Not Quarantines, for Ebola Heroes
Bioethicist Arthur Caplan objects to the mandatory quarantine being imposed by New York and New Jersey for returning Ebola volunteers.






New York and New Jersey Will Quarantine Ebola Doctors
Doctors coming back from treating Ebola patients in West Africa will have to sit out a mandatory 21-day quarantine in New York and New Jersey.






Channel: Medscape Hematology-Oncology Headlines
Half of Biopsies for Bladder Cancer Inadequate for StagingHalf of Biopsies for Bladder Cancer Inadequate for Staging
A study suggested that about half of biopsies for bladder cancer are inadequate for proper staging, and low-quality biopsies are linked to higher mortality.
Medscape Medical News
Sequencing Radium-223 and Docetaxel in Prostate CancerSequencing Radium-223 and Docetaxel in Prostate Cancer
A prespecified analysis of the ALSYMPCA data suggests radium-223 can be used in sequence with docetaxel in metastatic castration-resistant prostate cancer.
Medscape Medical News
European OK for Olaparib in Ovarian CancerEuropean OK for Olaparib in Ovarian Cancer
The first ever PARP inhibitor is inching closer to approval, after Europe issued a positive opinion for its use in ovarian cancer
News Alerts
Metastatic Cancer Neglected in New US Clinical Trial GroupMetastatic Cancer Neglected in New US Clinical Trial Group
Cooperative clinical trial groups sponsored by the National Cancer Institute have been reorganized. Metastatic disease is largely left out of the largest group's research agenda.
Medscape Medical News
Thyroid Cancer Genomics May Redefine Diagnosis, Treatment Thyroid Cancer Genomics May Redefine Diagnosis, Treatment
The Cancer Genome Atlas Network project expands the molecular landscape of papillary thyroid cancers, but will it improve patient care?
Medscape Medical News
'Co-Rounding' Cuts Inpatient Oncology Stays, Readmissions'Co-Rounding' Cuts Inpatient Oncology Stays, Readmissions
In a new study, palliative care specialists and medical oncologists shared responsibility for cancer patients on a hospital floor, and good things happened.
Medscape Medical News
Money Woes Spawn Cancer Patient Treatment ShortcutsMoney Woes Spawn Cancer Patient Treatment Shortcuts
Even if they have insurance, cancer patients often struggle with out-of-pocket costs and, as a result, make changes to their lifestyle and treatment regimens.
Medscape Medical News
Genetic Test Showing Increased CRC Risk Prompts No ActionGenetic Test Showing Increased CRC Risk Prompts No Action
Individuals who were shown by genetic testing to be at increased risk for colorectal cancer (CRC) did not increase screening.
Medscape Medical News
Got Colon Cancer, Get Milk?Got Colon Cancer, Get Milk?
Dr Alok Khorana reports on a study indicating that increased milk and calcium intake is associated with improved outcomes after diagnosis of colorectal cancer.
Medscape Oncology
EHRs Not Living Up to the HypeEHRs Not Living Up to the Hype
In a Medscape survey, one third of oncologists said electronic health records made patient services worse, and two thirds said they took away face-to-face time with patients.
Medscape Oncology

 

 
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