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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
Warning on future of US blood collection
The USA needs a "better, more efficient and more sustainable" blood collection system, according to a new investigation.
Smart patch for anticoagulants?
A new "smart patch" may improve the delivery of anti-coagulants, according to its developers.
Oral factor IX capsule close
Scientists have developed a capsule that could enable oral treatment for hemophilia B, it has been announced.
How blood ages
Infusing "old" blood into a young animal can have negative effects, according to researchers investigating the aging process in blood.
Advance in sickle cell gene therapy
New work on the gene that causes sickle cell disease could help pave the way for new gene therapy, say researchers.
Blood cells linked to disease in major European genetic project
European researchers have revealed the findings of a major project that set out to investigate links between blood cell development and a range of disease.
EBV gene link to cancer
British scientists have made a crucial genetic breakthrough in understanding how the Epstein-Barr virus causes hematological cancers, it was announced last night.
Transfused blood can be preserved
Scientists have found that pre-treating red blood cells for transfusion with nitric oxide may cut the risk of pulmonary hypertension.
Progress on acute leukemia genetics
The genetics of a new high-risk subtype of acute lymphoblastic leukemia have recently been identified, say researchers.
New AML genes discovered
Scientists have created a map of genes linked to a specific form of acute myeloid leukemia.
Channel: NBC News Health
US Health Spending Grew Especially Fast Last Year
U.S. health spending always grows but it grew particularly quickly last year as more people got health insurance for the first time.
Another Miami Neighborhood Cleared of Zika
Florida state officials declared a second outbreak of Zika over in the Miami area, this one in a neighborhood north of Miami known as Little River.
Should I Worry About Zika? Your Questions Answered
Zika has now caused two separate outbreaks in the Miami area, infecting tourists from Texas, New York and Taiwan. Americans are starting to worry.
Suicide at 14: 'I Have Racked My Brain Trying to Understand'
Connor Ball had seen more of the world than many people could hope to see in a lifetime. When he took his own life in 2011, it was a shock.
Most Americans Don't Want Obamacare Repealed
Only one in four people in the United States wants president-elect Trump to repeal his predecessor's health care law, according to a poll.
Gut Germs May Affect Parkinson's, Study Finds
The bacteria and other germs living inside a person's digestive system may affect symptoms of Parkinson's disease, researchers reported Thursday.
Magic Mushroom Drug Helps Cancer Patients
The "magic mushroom" drug psilocybin can help cancer patients relax and feel less distressed about their disease, two teams of doctors found.
Can Internalizing Stereotypes Make You Sick?
Could stereotypes perpetuated by healthcare providers be internalized by members of marginalized groups and literally us sicker?
U.N. Apologizes for Haiti Cholera Spread, Not for Causing It
Researchers say cholera was introduced to Haiti by Nepalese troops who were part of a U.N. peacekeeping mission.
Outgoing UN Head Pledges to Continue Working for AIDS-Free World
Ban Ki-moon marked his last World AIDS Day as Secretary-General of the UN by pledging to continue working to achieve an AIDS-free world.
Channel: Medscape Hematology-Oncology Headlines
Superior Outcomes With Brentuximab in Cutaneous T Cell Lymphoma Superior Outcomes With Brentuximab in Cutaneous T Cell Lymphoma
Brentuximab vedotin showed clinically superior outcomes compared with standard of care in patients with cutaneous T cell lymphoma.
Medscape Medical News
Immunotherapy as First-Line Lung Cancer Treatment? Immunotherapy as First-Line Lung Cancer Treatment?
Dr Mark Kris discusses three major factors that help determine whether to use targeted agents like pembrolizumab as initial therapy.
Medscape Oncology
Saying Nighty-Night to Breast Cancer Sleep DisturbanceSaying Nighty-Night to Breast Cancer Sleep Disturbance
Acupuncture improved sleep better than did gabapentin in breast cancer survivors with hot flashes.
Medscape Medical News
For Cancer Distress, Hallucinogen Has Unprecedented Results For Cancer Distress, Hallucinogen Has Unprecedented Results
Cancer-related anxiety and depression are common and can be deep-seated. Now, two landmark clinical trials of psilocybin have results that experts are calling groundbreaking.
Medscape Medical News
ASH16 Preview: New CAR T-cell Data Come at a Pivotal MomentASH16 Preview: New CAR T-cell Data Come at a Pivotal Moment
Dr Miguel-Angel Perales summarizes key recent developments in the field of CAR T cells and outlines the most important CAR T cell trials to follow at the 2016 ASH Annual Meeting.
Medscape Oncology
New Cancer Drugs With No Benefit 'Should Be Withdrawn'New Cancer Drugs With No Benefit 'Should Be Withdrawn'
Many new cancer drugs were approved by the FDA on the basis of preliminary surrogate endpoints, and postmarketing studies do not support any real benefit.
Medscape Medical News
American Society of Hematology (ASH) 2016 Annual MeetingAmerican Society of Hematology (ASH) 2016 Annual Meeting
Read clinically focused news coverage of key developments from ASH 2016.
Medscape Oncology
No Lack of Enthusiasm for CAR-T Development, Experts SayNo Lack of Enthusiasm for CAR-T Development, Experts Say
Medscape Oncology asked a spectrum of researchers in the field to speculate on the implications of Novartis's decision to reintegrate cell therapy into its oncology unit.
Medscape Oncology
What's New at World's Biggest Breast Cancer MeetingWhat's New at World's Biggest Breast Cancer Meeting
The San Antonio Breast Cancer Symposium will feature a diverse set of headlining studies.
Medscape Medical News
High Out-of-Pocket Expenses for Cancer Patients on MedicareHigh Out-of-Pocket Expenses for Cancer Patients on Medicare
Medicare patients without supplemental insurance can find themselves with significant out-of-pocket expenses after a cancer diagnosis.
Medscape Medical News


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