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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
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.
St Mary's September 2016 Courses
Last few places
Stem cell transplants "age" immune system
Autologous stem cell transplants have many benefits - but they may also accelerate aging of the immune system, researchers have reported.
How storage time affects biobank samples
Long-term freezing of blood samples in biobanks does not prevent changes to protein levels, researchers have warned.
Channel: NBC News Health
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.
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.
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 Misleads 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.
Study Compares Clinton, Trump Health Plans
Clinton's proposals would insure up to 9.6 million more people in 2018 and lower costs, while Trump's proposals would do the opposite, a study finds.
What Do Polyester Pants Do To Your Sex Life?
Try this next time you have an itchy arm: Look in the mirror and scratch the wrong arm. Scientists who found it worked have now been honored.
Peter Alexander Dons Blindfold in Support of Ailing Sister
For years, NBC correspondent Peter Alexander watched his sister, Rebecca, battle an illness that slowly robbed her of sight and hearing.
Is It Time to Get Rid of Middle School?
Research says students who attend schools that run from kindergarten through eighth grade are happier.
Channel: Medscape Hematology-Oncology Headlines
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
Molecular Imaging Brings Precision Oncology Closer to ClinicMolecular Imaging Brings Precision Oncology Closer to Clinic
Precision oncology is getting closer with the development of novel molecular imaging tests, but hurdles, including reimbursement for the tests, still need to be overcome.
Medscape Medical News
Conflicting Interpretation of Cancer Genetic Test Results CommonConflicting Interpretation of Cancer Genetic Test Results Common
Commercial labs often differ in their interpretation of genetic variants and cancer risk when using multiplex cancer panels.
Medscape Medical News
Data: May Be OK to Give 'T' to Men With Prostate CancerData: May Be OK to Give 'T' to Men With Prostate Cancer
The idea of prescribing testosterone to men with prostate cancer was once an anathema. But new data from a small patient cohort suggest that it may be okay.
Medscape Medical News
A Different Kind of Opioid Crisis in Cancer PatientsA Different Kind of Opioid Crisis in Cancer Patients
Opioid prescribing has skyrocketed in many countries, but dying cancer patients are being undertreated with the powerful drugs, a new study from the UK finds. An expert said the same applies in the US.
Medscape Medical News


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