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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
A better way to deal with those constant interruptions
How a "ready-to-resume plan" can help beat back office distractions.
For nurses, sexual harassment from patients is 'par for the course'
The #MeToo movement has prompted nurses to stand up for themselves and put an end to what they describe as pervasive sexual harassment from their male patients.
Low-fat? Low-carb? Either diet works the same
You can't game the system when it comes to weight loss
Kratom blamed for salmonella outbreak
CDC says stay away from kratom for now
How to figure out what a 'healthy day' looks like for you
Diet and exercise guidelines are a good place to start. But true progress comes from defining what a healthy lifestyle looks like for you.
New treatment for peanut allergy helped kids
Flour sprinkled over food helped sensitize children to nuts, the company said
Measles cases more than triple in Europe
Low vaccination rates drive measles outbreaks
Trump pushes insurance that doesn't cover pre-existing conditions
The Trump administration is moving to expand the use of temporary insurance, which could offer customers a cut-rate option while raising premiums elsewhere.
Studies Find Small Risk From Rotavirus Vaccine
Babies vaccinated against rotavirus may have a small risk of a dangerous intestinal blockage, researchers reported Tuesday.
How to use a 'love list' to find your ideal romantic partner
The four-step process of putting pen to paper and outlining your perfect mate.
Channel: Medscape Hematology-Oncology Headlines
'Unrealistic Expectations' for Cancer Survivorship Care Plans'Unrealistic Expectations' for Cancer Survivorship Care Plans
In the current literature, there is limited evidence of benefit from survivorship care plans. Researchers are calling for a shift in the focus of current research.
Medscape Medical News
Oncologist Critical in Motivating Cancer Survivors to ExerciseOncologist Critical in Motivating Cancer Survivors to Exercise
Oncologists need to play a larger role in discussing exercise with cancer survivors, and home-based exercise interventions offer advantages, say Australian researchers.
Medscape Medical News
Suicide Among Cancer Survivors -- Highest Risk in HNCSuicide Among Cancer Survivors -- Highest Risk in HNC
Compared to all other cancer types, with one exception, the risk for suicide is significantly higher among survivors of head and neck cancer (HNC).
Medscape Medical News
Exercise Improves Range of Motion After Lymph Node SurgeryExercise Improves Range of Motion After Lymph Node Surgery
Exercise plus education improves arm mobility after lymph node dissection faster than does education alone, especially in the arm affected by the dissection.
Medscape Medical News
Exercise Benefits Cancer Patients Even 4 Years LaterExercise Benefits Cancer Patients Even 4 Years Later
A long-term follow-up showed that an exercise program conducted during active treatment continues to confer benefits even 4 years later.
Medscape Medical News
FDA OKs Durvalumab (Imfinzi) for Reducing Risk for NSCLC Progression FDA OKs Durvalumab (Imfinzi) for Reducing Risk for NSCLC Progression
The immunotherapy becomes the first treatment approved to reduce the risk for progression in hard-to-treat stage III non-small cell lung cancer.
FDA Approvals
Feb 16, 2018 This Week in CardiologyFeb 16, 2018 This Week in Cardiology
ICD use in patients with CKD, PFO and peri-operative stroke, LV assist devices, guideline-directed medical therapy after revascularization, and upcoming trials in 2018 are discussed in this week's podcast.
theheart.org on Medscape
Intriguing: Better Survival in Melanoma in Obese MenIntriguing: Better Survival in Melanoma in Obese Men
Observations across cohorts of patients treated for metastatic melanoma have led to an intriguing conclusion: survival is better in obese patients, but only for men.
Medscape Medical News
Overlooked Biomarker May Predict Cancer Immunotherapy ResponseOverlooked Biomarker May Predict Cancer Immunotherapy Response
Dr David Kerr on data showing that tumors with extensive aneuploidy may not benefit as much from immune checkpoint blockade.
Medscape Oncology
Beyond APHINITY: What Now After Pivotal Breast Cancer Trial?Beyond APHINITY: What Now After Pivotal Breast Cancer Trial?
Dr Kathy Miller speaks with APHINITY's principal investigator about whether survival in HER2+ disease can be pushed even further.
Medscape Oncology

 

 
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