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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
Boost for factor VIII product
A recombinant factor VIII product has proved effective in treating the highest risk patients with hemophilia A, a conference has heard.
Drug hope for stem cell relapse
An immunotherapy trial has shown improved outcomes for relapsed transplant recipients.
Genes underpin leukemia brain effects
Brain impairments in children treated for acute lymphoblastic leukemia may be linked to certain genes, researchers have found.
Targeted treatments boost hematology outcomes
Outcomes are improving for patients with hard to treat forms of lymphoma and multiple myeloma, a major conference has heard.
Immunotherapy "exciting" - conference told
The development of immunotherapy to tackle blood cancers is showing some its "most exciting developments to date", a major conference has heard.
Tamoxifen may protect against some blood disorders
A breast cancer drug could be used to treat some blood disorders for which there is no known cure, a new study has discovered.
Haemophilia supplement from Nature
Vol. 515 No. 7528_supp ppS157-S200
'Transfusion, Thrombosis and Management of Bleeding'
Anaesthesia announces the publication of a special supplement on 'Transfusion, Thrombosis and Management of Bleeding', to coincide with the UK launch of Patient Blood Management in the NHS
New therapy combats treatment-resistance in rare leukemia
A new therapy that overcomes treatment resistance in aggressive forms of leukemia has been developed, it has been revealed.
Sickle cell trial ends early due to success
Hydroxyurea therapy has been proven to provide safe and effective disease management of sickle cell anemia (SCA) and reduce the risk of stroke, researchers say.
Channel: NBC News Health
The Flu Is Widespread in 29 States, CDC Says
Federal health officials have warned that this year's vaccine does not provide much protection.

Caramel Apples Linked to Five Deaths, CDC Says
Health officials are warning consumers to avoid prepackaged caramel apples after they were linked to five deaths and more than two dozen illnesses.

Caramel Apples Linked to 5 Deaths, CDC Says
Health officials are warning consumers to avoid prepackaged caramel apples after they were linked to five deaths and more than two dozen illnesses.

Could Christmas Worsen Ebola's Spread?
Aid experts worry that Christmas travel could spread more than good cheer. They're worried it will spread Ebola.

That Cheap Old Car Might Carry Deadly Cost for Teens
When shopping for a safe car for their teens, parents might want to aim for the newest model they can afford, a new study suggests.

One More Drug For Ebola Treatment Pipeline?
German doctors think they have another possible drug to add to the Ebola treatment pipeline.

Could Ibuprofen Extend Lives for Humans, Too?
Regular doses of ibuprofen were found to extend lifespans - with healthy bonus time - in worms, flies and yeast, according to a new study.

Baby Has 'Worst Disease You've Never Heard Of'
The infant has a rare genetic condition that makes her skin blister and rupture from friction.

Air Pollution in Pregnancy May Nearly Double Autism Risk
Pregnant women may nearly double their risk of giving birth to an autistic child by inhaling smog spewed by vehicles or smoke stacks, a study finds.

New Stroke Treatment: Removing Clot Can Limit Disability
For the first time in two decades, a new treatment has been shown to limit damage from a common type of stroke.

Channel: Medscape Hematology-Oncology Headlines
EU Thumbs Up for Bortezomib for Mantle Cell LymphomaEU Thumbs Up for Bortezomib for Mantle Cell Lymphoma
The European authorities have issued a positive opinion for the new indication to bortezomib, already marketed for multiple myeloma.
International Approvals
FDA Approves Olaparib (Lynparza) for BRCA Ovarian CancerFDA Approves Olaparib (Lynparza) for BRCA Ovarian Cancer
The approval follows a resubmission of new data after an advisory committee recommended against approval earlier this year.
FDA Approvals
First-ever ASCO Partnership With PathologistsFirst-ever ASCO Partnership With Pathologists
Oncologists and pathologists are increasingly interacting with one another as molecular diagnostics and tumor markers increasingly define cancers.
Medscape Medical News
The Year in Gynecologic Cancer: Bevacizumab and BeyondThe Year in Gynecologic Cancer: Bevacizumab and Beyond
Dr Maurie Markman highlights the most important developments and practice-changing clinical trials of 2014.
Medscape Oncology
CAR T-cells Are Durable, Drive Pediatric ALL AwayCAR T-cells Are Durable, Drive Pediatric ALL Away
The latest data from the pioneering researchers in Philadelphia provide an increasingly clear and longer-term picture of the unique immunotherapy in patients.
Medscape Medical News
Olaparib Approved in Europe for BRCA Ovarian CancerOlaparib Approved in Europe for BRCA Ovarian Cancer
First-in-class PARP inhibitor olaparib has been granted marketing authorization in Europe for use in certain BRCA-mutated ovarian cancers.
International Approvals
Screening Men With a Family History of Prostate CancerScreening Men With a Family History of Prostate Cancer
Men with a family history of prostate cancer may be more likely to have prostate cancer themselves, but do they benefit from the screening process? Dr Gerald Chodak discusses the latest research.
Medscape Urology
Advances in GI Cancer: 2014Advances in GI Cancer: 2014
Four experts from the Ruesch Center for the Cure of Gastrointestinal Cancers highlight progress made in gastrointestinal cancer in 2014.
Medscape Oncology
Melanoma 2014: Another Banner YearMelanoma 2014: Another Banner Year
An avalanche of drugs and drug approvals, new combination therapies, and clear improvement in survival rates made 2014 an exciting year in melanoma, as highlighted by Dr Antoni Ribas.
Medscape Oncology
The Future of Hodgkin Lymphoma -- Brentuximab and BeyondThe Future of Hodgkin Lymphoma -- Brentuximab and Beyond
Dr Bruce Cheson and Dr Ann LaCasce highlight data from ASH 2014 on brentuximab vedotin and discuss promising agents for Hodgkin lymphoma, including checkpoint inhibitors nivolumab and pembrolizumab.
Medscape Oncology


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