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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
vCJD test could enable blood supply screening
A new blood test has been found to detect variant Creutzfeldt-Jakob disease with high accuracy, an international research team has reported.
Fanconi anaemia linked to major cancer gene
A molecular link between a rare childhood genetic disease and a major cancer gene has been found that could result in improved treatment for some patients, according to US researchers.
Genomic analysis of AML subtype is revealed
The first comprehensive genomic analysis of a rare subtytpe of acute myeloid leukemia has been unveiled at the annual meeting of the American Society of Hematology in San Diego, USA.
Fasting may limit leukaemia
Intermittent fasting could be effective at stalling the progress of B-cell and T-cell acute lymphoblastic leukaemia in children, researchers have found.
Hope for pre-eclampsia therapy
Treating white blood cells with hormones may prove an effective therapy for pre-eclampsia, according to laboratory research unveiled by British researchers.
Dormant cells may explain leukaemia relapse
German researchers say they have found a rare population of dormant leukaemia cells, which may help explain disease relapse.
UK study to trial emergency blood products
A major British study is to test the benefits of giving blood products to seriously injured patients before they are taken to hospital, it has been announced.
Diabetes link to lymphoma-related heart failure
Patients with diabetes treated for cancer may face an increased risk of developing heart failure, a European conference has heard.
Ribosome role in multiple myeloma
Ribosome defects might play a key role in the development of multiple myeloma in a significant proportion of patients with the disease, according to Belgian scientists.
TKI reduction is 'safe' for some leukemia patients, studies show
Some chronic myelogenous leukemia (CML) patients can safely reduce their intake of a treatment drug to lessen the side effects, British researchers have told a major conference.
Channel: NBC News Health
Want to Calm Your Mind? Have Compassion for Others
Every day that the news gives us something to think about, the world also gives us something to do to help our fellow human beings.
Vaccine Skeptic Message Gets Bolder
Vaccine skeptics, often called anti-vaxxers, are getting bolder with their message that vaccines are the product of a coverup by industry, government and media.
Sen. Collins Has 'Serious Reservations' Over Obamacare Repeal
Sen. Susan Collins announced Sunday that it is "very difficult" for her to see herself voting for the GOP's most recent Obamacare repeal attempt.
What You Should Be Doing Now to Ease Seasonal Affective Disorder
Why darker days may be leaving you SAD ... and what do about it.
911 Outages Imperil Public Safety in Cincinnati and Elsewhere
According to an internal city document obtained by NBC, Cincinnati has had 10 911 outages since June 2016. The latest one lasted three and a half hours.
Science-Backed Reasons to Go Apple Picking This Weekend
This is how your brain and body react when you're at the orchard.
'Worse Than a War Zone': Medical Services on Dominica Crippled by Maria
Hurricane Maria left medical facilities on the Caribbean island of Dominica "worse than in a war zone," according to the country's leader.
This Family Was Already Struggling. Then Came Harvey
Hurricane Harvey hit one family in southeast Texas especially hard. They are still clearing a home they had just remodeled for their injured son.
Aaron Hernandez Had Brain Disease, Doctors Say
Former New England Patriots star Aaron Hernandez had CTE, a serious brain disease linked with concussions and head impacts, Boston University said.
Earthquake Victims Face Race Against the Clock
If survivors have access to clean air and can avoid potentially fatal injury, victims can survive unimaginable conditions, at least for a little while.
Channel: Medscape Hematology-Oncology Headlines
First Immunotherapy Approved for Gastric CancerFirst Immunotherapy Approved for Gastric Cancer
Pembrolizumab is now indicated for third-line treatment of gastric or gastroesophageal junction cancer.
Medscape Medical News
American Society for Radiation Oncology (ASTRO) 2017 Annual MeetingAmerican Society for Radiation Oncology (ASTRO) 2017 Annual Meeting
Read clinically focused news coverage of key developments from ASTRO 2017.
Medscape Oncology
Palliative Care Curbs Depression and Trauma in HSCT PatientsPalliative Care Curbs Depression and Trauma in HSCT Patients
A brief, inpatient palliative care intervention reduced both depression and PTSD symptoms in patients undergoing hematopoietic stem cell transplant (HSCT), with sustained effects at 6 months.
Medscape Medical News
New Guidelines for Managing CAR T-Cell Acute ToxicitiesNew Guidelines for Managing CAR T-Cell Acute Toxicities
Researchers at MD Anderson have developed a framework to help recognize and manage unique acute toxicities associated with CAR T-cell therapy.
Medscape Medical News
Do Tattoos Raise the Risk for Cancer?Do Tattoos Raise the Risk for Cancer?
Components of the ink in tattoos migrate from the skin to the lymph nodes, leading to chronic enlargement, but the health risk has yet to be determined.
Medscape Medical News
In Breast Cancer, a Victory for Common Sense In Breast Cancer, a Victory for Common Sense
An ambitious randomized clinical trial neither accrued its planned number of patients nor met its expected events but has changed cancer care anyway.
Medscape Medical News
Going Broke: Financial Concerns of Palliative Care PatientsGoing Broke: Financial Concerns of Palliative Care Patients
Financial concerns can negatively influence a patient's response to treatment and care.
Medscape Nurses
Imatinib a Double-Edged Sword for Pregnant CML PatientsImatinib a Double-Edged Sword for Pregnant CML Patients
On the one hand, imatinib keeps the CML in check; on the other hand, it carries a risk for fetal congenital malformation if taken during pregnancy.
Medscape Medical News
Futile: Prostate Cancer Vaccine Phase 3 Trial EndsFutile: Prostate Cancer Vaccine Phase 3 Trial Ends
Prostvac is an immunotherapy designed to induce T-cell responses and thus kill prostate cancer cells. As a monotherapy, it is not effective.
Medscape Medical News
Severe Health Problems Plague Survivors of Childhood CA Severe Health Problems Plague Survivors of Childhood CA
Specialized healthcare delivery is needed for diverse subgroups of adult cancer survivors with complex medical needs, say researchers.
Medscape Medical News


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