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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
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
Couple Celebrates Twin Pregnancy After Fertility Struggle: 'We prayed for 953 days'
The couple, who were high school sweethearts, live outside of Houston in The Woodlands, Texas. They learned about their fertility problems shortly after they started trying to have a family in 2014.
What 'This Is Us' Got Right About Panic Attacks
This week's episode of 'This Is Us' highlighted an important topic: panic attacks. And it got viewers talking.
Doctors Can Ask Patients About Guns: Federal Court
A federal appeals court has ruled that Florida doctors can talk to patients about gun safety, declaring a NRA-supported law aimed at restricting such discussions to be a violation of the First Amendment's right to free speech.
Two Women Positive for Zika After False Negatives in D.C.
The CDC is retesting 409 specimens that tested negative in Washington, D.C., last year, and so far two have already come back positive.
Flu Vaccine Protects Only About Half, CDC Says
The CDC says the current flu vaccine protects only about half of people from infection.
Stop Calling Trump Mentally Ill, Psychiatrist Says
It's not a personality disorder if you just landed the most important job in the world, one psychiatrist points out. He should know. He wrote the book.
What the Sexiest Female Lips Really Look Like
Americans are turning to lip fillers and augmentation surgery in record numbers. But what does an ideal pair of lips really look like?
Brain Scans Detect Signs of Autism in Babies Before Age 1
It may be possible to detect autism in babies before their first birthdays, a much earlier diagnosis than ever before, a small new study finds.
Health Spending Set to Grow in 2017
Health spending slowed in 2016 but will speed up this year, driven mostly by Medicare spending and insurance premiums, government economists forecast.
Fasting Diet Takes Off Pounds, Improves Health
People who followed a special diet in which they "fasted" five days a month lost pounds and improved cholesterol, blood pressure and blood sugar.
Channel: Medscape Hematology-Oncology Headlines
In NEJM: Practice-Changing Trial in Urothelial CancerIn NEJM: Practice-Changing Trial in Urothelial Cancer
For patients with advanced urothelial carcinoma that progresses after platinum-based chemotherapy, use of pembrolizumab as second-line therapy improves overall survival and should change practice in this setting.
Medscape Medical News
Take With Food, Cut $9000 Prostate Cancer Pill Cost by 75%Take With Food, Cut $9000 Prostate Cancer Pill Cost by 75%
As with so many newer cancer drugs, abiraterone, for advanced castration-resistant prostate cancer, is very expensive. Here's a tip that may reduce cost greatly and does not appear to hurt efficacy.
Medscape Medical News
Questions Over Adjuvant Ipilimumab in MelanomaQuestions Over Adjuvant Ipilimumab in Melanoma
An editorial raises questions on data for patient-reported outcomes for adjuvant ipilimumab, 10 mg/kg, in melanoma; toxicity also questioned.
Medscape Medical News
Epigenetic Changes in Sperm Found 10 Years After Chemo Epigenetic Changes in Sperm Found 10 Years After Chemo
The new finding suggest that young men who undergo chemotherapy may have lasting genetic changes in their sperm that could be passed on to the next generation.
Medscape Medical News
Humorous Sun Safety Campaign Aims to 'Help a Dane' AbroadHumorous Sun Safety Campaign Aims to 'Help a Dane' Abroad
A humorous and innovative campaign to remind Danes to follow sun safety advice while abroad by asking the locals for help has been launched by sun safety campaigners across five countries.
Medscape Medical News
New Score Predicts Liver Cancer After TransplantNew Score Predicts Liver Cancer After Transplant
Adding the MORAL score to Milan criteria identifies new subset of patients at high risk and identifies patients who should not undergo liver transpant with a living donor.
Medscape Medical News
Florida Physician to Pay $18 Million for Medicare FraudFlorida Physician to Pay $18 Million for Medicare Fraud
In a whistle-blower case, Gary Marder, DO, allegedly diagnosed and treated patients for skin cancer they didn't have, and pocketed millions from Medicare.
Medscape Medical News
Introducing the Human-Machine 'Centaur' for Cancer CareIntroducing the Human-Machine 'Centaur' for Cancer Care
Cancer care delivery has been mostly unchanged for the past 50 years but now needs a new model, a centaur, say Stanford University academics.
Medscape Medical News
Scalp Cooling to Prevent Chemo Hair Loss Shows Promise Scalp Cooling to Prevent Chemo Hair Loss Shows Promise
Two different scalp cooling devices for the prevention of chemotherapy-induced alopecia show distinct promise in helping preserve hair for many patients.
Medscape Medical News
Some Stop Immunotherapy, Still Have Controlled CancerSome Stop Immunotherapy, Still Have Controlled Cancer
In a small study of patients with advanced renal cell carcinoma, nearly half had durable responses after discontinuing checkpoint inhibitors because of toxicities.
Medscape Medical News

 

 
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