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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

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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
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.
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.
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.
Here's a Thrilling Cure for Kidney Stones
Some researchers go to the jungle in the name of medical discovery. Others brave mosquito bites, spiders and snakes. This team headed to Disney World.
9 Out of 10 People Worldwide Breathe Dirty Air: WHO
The WHO says three million deaths a year are linked to exposure to outdoor air pollution.
Morning Sickness Is a Good Sign, Study Finds
Morning sickness may be one of the worst things about pregnancy, but researchers say they've confirmed the common wisdom: It's a good sign.
Research Finds Talc Doesn't Cause Cancer. Juries Disagree
Two lawsuits ended in jury verdicts worth $127 million. But scientists can't find good evidence showing talc could cause cancer.
Zika Virus Damage Fools Parents, Experts Say
From babies who crawl way too soon to infants who cry 24 hours a day, Zika's effects are startling the doctors treating the infected babies.
Female U.S. Vets With PTSD Find Comfort Far From Home
Female U.S. war vets are finding help for their post-traumatic stress disorder far from home.
Double Dose of Pesticides Stops Zika Mosquitoes
Two types of pesticides were needed to kill both Zika-carrying adult mosquitoes and their larvae in Florida, the CDC reported.
Channel: Medscape Hematology-Oncology Headlines
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
FDA Warning on Ovarian Cancer Screening Test -- Is It Enough? FDA Warning on Ovarian Cancer Screening Test -- Is It Enough?
Dr Maurie Markman warns against false claims by companies that market ovarian cancer screening tests and makes the case for more oversight of these tests by the FDA.
Medscape Oncology
First Phase 3 Results for SRS vs WBRT for Brain MetastasesFirst Phase 3 Results for SRS vs WBRT for Brain Metastases
There has been a lot of news coverage about stereotactic radiosurgery for brain metastases. But in a first-of-its-kind phase 3 trial comparing it with whole-brain radiotherapy, the results were mixed.
Medscape Medical News
A New Oncology Target: The HeartA New Oncology Target: The Heart
Delivering the most effective dose of chemotherapy without causing cardiotoxicity is a key goal of the emerging field of cardio-oncology. But are the current predictors of cardiotoxic risk adequate?
Medscape Oncology
Antiemetics Overused in Cancer Patients at Low Risk for CINVAntiemetics Overused in Cancer Patients at Low Risk for CINV
Overuse of antiemetic prescribing in cancer care initially dropped after the release of Choosing Wisely guidelines but soon crept right back up.
Medscape Medical News
Is Immunotherapy Safe for Older Melanoma Patients?Is Immunotherapy Safe for Older Melanoma Patients?
How do adverse events from immunotherapy compare in younger vs older patients? Dr Weber comments on the safety of checkpoint inhibitors for our older patients.
Medscape Oncology
Checkpoint Inhibitors Impressive, but Not a Chemo ReplacementCheckpoint Inhibitors Impressive, but Not a Chemo Replacement
Although checkpoint inhibitors clearly have impressive activity for some patients, it's not time to replace chemotherapy just yet, says Dr Mark Kris.
Medscape Oncology

 

 
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