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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

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Channel: BloodMed.com News
New AML approach 'promising'
A "promising" new approach to developing new therapies for acute myeloid leukemia has been unveiled by an American research team.
Cancer molecular mechanisms decoded
Molecular causes underlying acute myeloid leukemia have been decoded for the first time by Canadian researchers.
Increased VTE risk following caesarean section
Women are four times more likely to suffer postpartum venous thromboembolism after a caesarean section compared to a vaginal birth, new Swiss analysis has revealed.
Organizations join forces in pediatric cancer research
Two research bodies are joining forces in a transatlantic effort to understand genetic mutations in pediatric cancers.
Anniversary celebrates stem cell donors and transplants
British stem cell services celebrated a double anniversary for World Marrow Donor Day.
Hope for CML treatment
A new kind of drug may be able to kill diseased stem cells that cause chronic myeloid leukemia, British researchers have reported.
Call for pregnancy screening before chemotherapy begins
Standardized pregnancy screening should be introduced for adolescent patients with leukemia before they begin chemotherapy, according to a US new study.
T-Cell therapy success for advanced lymphoma patients
An early US study of patients with advanced non-Hodgkin lymphoma (NHL) has found that T-cell therapy following a specific type of chemotherapy works best.
Leukemia patients 'benefit from cord blood transplant'
Leukemia patients with a high risk of relapse could benefit from cord blood transplants rather than bone marrow cells from unrelated donors, according to a new study.
Progress on sickle cell gene therapy
Scientists are making progress on gene therapy for reducing sickle-induced red-cell damage in sickle cell disease, it has been announced.
Channel: NBC News Health
600K Vets May Go Uninsured Over Medicaid Stand: Report
More than 600,000 veterans will go without health insurance next year unless 19 states stop holding out against expanding Medicaid, researchers say.
Researchers Make 3-D Printed 'Bone' for Implants
Researchers have invented a new type of artificial bone that can be shaped using a 3-D printer for customized implants.
FDA Approves First 'Artificial Pancreas'
The FDA has approved the first artificial pancreas - a cellphone-sized device that automatically takes care of insulin and blood sugar levels.
Miami's Zika Search Turns Up Dengue, Too
Florida health officials who have been testing thousands of residents for Zika virus have found another infection: dengue virus.
'Queer Questions' Podcast Combats Stigma in Kenya
"Queer Questions" is a new Kenyan podcast that is taking on stigma and stereotypes with an openness that is both rare and risky in a country where homosexual activity is illegal.
Baby Born Using 'Three Parent' Technique, Doctors Say
A healthy baby boy has been born after he was conceived using a 'three-parent' technique to manipulate his DNA, doctors said Tuesday.
'Destruction Is Everywhere' After 2 Hospitals Attacked
Both M2 and M10 suffered structural damage ? leaving Aleppo with just six working hospitals, only three of which have trauma centers.
Aetna to Offer Cut-Price Apple Watch to Some Members
Health insurer Aetna said it would offer some customers discounts on Apple's smartwatch, marking the first such deal made by the tech giant.
Is It Healthy? FDA Is Asking What You Think
The Food and Drug Administration wants to know what you think "healthy" should mean when it's on a food label.
Measles Has Been Eliminated in the Americas
Measles has been eliminated in all of the Americas, from Canada to Chile, the World Health Organization declared Tuesday.
Channel: Medscape Hematology-Oncology Headlines
Long-term Fatigue Plagues Hodgkin's Lymphoma SurvivorsLong-term Fatigue Plagues Hodgkin's Lymphoma Survivors
Findings from a longitudinal study of the German Hodgkin Study Group show a high incidence of severe acute and persistent fatigue in survivors of Hodgkin's lymphoma.
Medscape Medical News
'Good Tool': Hydrogel Spares Rectum From Radiation'Good Tool': Hydrogel Spares Rectum From Radiation
Long-term safety data show a durable effect in men treated for prostate cancer.
Medscape Medical News
Is IMRT for Gynecologic Cancers Less Toxic?Is IMRT for Gynecologic Cancers Less Toxic?
Pelvic IMRT reduces acute patient-reported toxicity compared to standard pelvic radiation therapy.
Medscape Medical News
5 Things You Need to Know About Precision Medicine5 Things You Need to Know About Precision Medicine
The National Institutes of Health is set to embark on the most ambitious precision medicine effort to date. Learn more about this effort, including why precision medicine is more than just genetics.
Medscape Oncology
JAK Inhibitor Drugs Show Promise in Alopecia AreataJAK Inhibitor Drugs Show Promise in Alopecia Areata
Two different JAK inhibitor drugs, ruxolitinib and tofacitinib, have shown promise as a treatment for alopecia areata in small clinical trials.
Medscape Medical News
'Revolving Door' Between the FDA and Industry?'Revolving Door' Between the FDA and Industry?
About half of the medical reviewers who leave the FDA subsequently work for the industry they used to regulate, and this is a cause for concern, say the authors of a new paper.
Medscape Medical News
SBRT Doubled Survival Rates in Stage I NSCLC at VASBRT Doubled Survival Rates in Stage I NSCLC at VA
Analysis of VA databases reveals dramatic improvement in survival with stereotactic body radiation therapy.
Medscape Medical News
Prostate Cancer Radiation in 2.5 Weeks: 'Extreme' but SafeProstate Cancer Radiation in 2.5 Weeks: 'Extreme' but Safe
Scandinavian researchers are pushing the boundaries of hypofractionation in a phase 3 trial among men with intermediate-risk disease; 2-year toxicity data are now available.
Medscape Medical News
Magic Mouthwash Really Works, Says Phase 3 TrialMagic Mouthwash Really Works, Says Phase 3 Trial
The mouth rinse is widely used but has not been robustly studied. That is now changed, and the news is good.
Medscape Medical News
SRS Beats Watching for Local Control of Brain MetsSRS Beats Watching for Local Control of Brain Mets
Postoperative stereotactic radiosurgery is a less toxic standard of care for patients with brain metastases compared with postoperative whole-brain radiation.
Medscape Medical News


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