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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
DNA avenue for sickle cell therapy
Scientists may have discovered a new strategy for tackling sickle cell disease.
Babies 'unharmed' by maternal cancer treatment
The children of mothers who receive cancer treatment during pregnancy do not seem to suffer ill-effects, according to a European study.
Overcrowding linked to reduce Hodgkin risk
Children brought up in overcrowded homes seem to enjoy protection against some forms of Hodgkin lymphoma, British researchers have reported.
Cheap, reliable drug cuts transfusions
Blood transfusions during hip or knee replacements may be prevented with an inexpensive drug, researchers state.
Sickle cell cure hopes
A new bone marrow transplant procedure has successfully treated adult patients with sickle cell disease, it has been announced.
Microbiome linked to sickle crisis
Antibiotics may help treat sickle cell patients during crises by depleting the microbiome, according to US researchers.
Social factors impact leukemia patients' survival
Insurance status, marital status, and income could affect the survival chances of young people with acute myelogenous leukemia, a new US report has claimed.
Hope for AML relapse patients
Targeting exhausted T cells could give hope to patients who suffer acute myeloid leukemia (AML) relapse after a stem cell transplant.
Switched on gene causes "aggressive AML"
A gene has been discovered that causes aggressive cancer in some patients with acute myeloid leukemia (AML), British researchers report today.
Antibody therapy hope for resistant multiple myeloma
Antibody therapy can be effective at achieving remission in some multiple myeloma patients whose disease is unresponsive to other drugs, according to the findings of a clinical trial.
Channel: NBC News Health
Ethicist: The ACLU is Right to Sue Catholic Hospitals
The ACLU is right in suing a chain of Catholic hospitals that refuse to perform abortions, argues bioethicist Arthur Caplan.

FDA Approves New Immune Therapy Drug For Lung Cancer
Federal officials approved a new drug Friday for last-ditch treatment of the deadliest cancer of all -advanced lung cancer.

Genetic Tests Offers Migraine Help
Your diet and DNA could contribute to migraines. WKYC's Monica Robins reports.

U.S. Averages a Mass Killing Every Two Weeks, Study Finds
Police have said so for years and now scientists have measured the effect: Mass shootings and school attacks do inspire copycats.

Struck by a Turtle? There's a Code for That
Medical providers have to use this new system of red tape to get reimbursed by health insurance and it's unintentionally amusing.

Ancient Virus May Cause ALS, Study Finds
A virus that infected people millions of years ago may be coming back to life again in some patients with ALS, researchers have found.

Low-Nicotine Cigarettes Cut Use, Dependence, Study Finds
Smokers who switched to special low-nicotine cigarettes wound up smoking less and were more likely to try to quit, a new study finds.

Could These Four Germs Protect Babies From Asthma?
Researchers looking into the causes of asthma say they've found a clue in an unusual place - inside the digestive systems of small babies.

Flavored Tobacco Lures Kids, CDC Says
Kids who smoke, vape or chew tobacco are flocking to the flavored varieties, a new government report shows.

Medicare Paid for $30M in Mystery Ambulance Rides
Medicare paid $30 million for ambulance rides for which no record exists that patients got medical care at their destination.

Channel: Medscape Hematology-Oncology Headlines
FDA Approves Pembrolizumab for Lung Cancer FDA Approves Pembrolizumab for Lung Cancer
This is the second immunotherapy to be approved for lung cancer; a host of others are waiting in the wings.
FDA Approvals
First Journal Devoted to Global Oncology LaunchedFirst Journal Devoted to Global Oncology Launched
The first journal devoted to global oncology has published its inaugural issue online.
Medscape Medical News
Cancer Family Caregiver Communication StylesCancer Family Caregiver Communication Styles
Identifying the caregiver's preferred style of communication helps to establish more effective communication about goals and plans for cancer care.
Medscape Nurses
Everolimus First Drug to Show Effect in Lung NETsEverolimus First Drug to Show Effect in Lung NETs
Already approved for use in pancreatic neuroendocrine tumors (NETs), the drug now shows efficacy in tumors originating in lung and gastrointestinal tract.
Medscape Medical News
Criteria for Active Surveillance of PCa 'Evolving'Criteria for Active Surveillance of PCa 'Evolving'
A new study provides more information about when men with prostate cancer may benefit from active surveillance, says Dr Gerald Chodak.
Medscape Urology
A Plan for Primary Care to Help With Rising Cancer DemandA Plan for Primary Care to Help With Rising Cancer Demand
The coming decades will see big increases in the number of cancer patients and survivors and will require increased involvement of primary care clinicians.
Medscape Medical News
Immunotherapy Combo for Melanoma Approved by FDAImmunotherapy Combo for Melanoma Approved by FDA
This is the first FDA approval of an immunotherapy combination for a cancer.
FDA Approvals
ED Induced by Prostate Biopsy Likely 'Underestimated'ED Induced by Prostate Biopsy Likely 'Underestimated'
A study of men with elevated PSA indicates that there is a loss of erectile function (ED) in the weeks and months after needle biopsy.
Medscape Medical News
Maintenance Treatment Improves Overall Survival in Myeloma Maintenance Treatment Improves Overall Survival in Myeloma
Pooled analysis of five major trials should finally settle the debate over the value of maintenance therapy after complete response to induction therapy for myeloma.
Medscape Medical News
Should Oncologists Solicit Donations From Patients?Should Oncologists Solicit Donations From Patients?
Donations are an important source of revenue for academic centers and hospitals, but should oncologists be directly involved in soliciting funds from their patients?
Medscape Medical News


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