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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

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: Medscape Hematology-Oncology Headlines
Key Melanoma Trials at ASCO Yield Encouraging Survival DataKey Melanoma Trials at ASCO Yield Encouraging Survival Data
The survival advantage seen in the COLUMBUS trial with a BRAF/MEK drug combination may be unprecedented, says Dr Jeffrey Weber.
Medscape Oncology
TAS-102 Could Tackle Unmet Need in Advanced Gastric CancerTAS-102 Could Tackle Unmet Need in Advanced Gastric Cancer
Patients with advanced/metastatic gastric cancer could experience a significant increase in overall survival with combination TAS-102 compared with placebo, phase 3 trial results indicate.
Medscape Medical News
Higher BMI Tied to Reduced Breast Cancer Risk in Younger WomenHigher BMI Tied to Reduced Breast Cancer Risk in Younger Women
Women age 18 to 54 years were less likely to develop premenopausal breast cancer if they were overweight rather than underweight.
Medscape Medical News
Ramucirumab Improves Survival in Poor-Prognosis HCCRamucirumab Improves Survival in Poor-Prognosis HCC
Patients with hepatocellular carcinoma who have high levels of a protein linked to a poor prognosis derive a significant survival benefit with ramucirumab, the results of a pooled analysis reveal.
Medscape Medical News
ASCO Data Establish Chemo-IO as Mainstay Frontline for NSCLCASCO Data Establish Chemo-IO as Mainstay Frontline for NSCLC
Dr Jack West moderates a panel discussion with Drs Josh Bauml and Sandip Patel on the most important lung cancer trials at ASCO 2018, with a focus on chemo-immunotherapy combinations.
Medscape Oncology
Tumor Mutation Burden as Biomarker: All-Systems-Go or Too Early?Tumor Mutation Burden as Biomarker: All-Systems-Go or Too Early?
Drs West, Patel, and Bauml debate the use of TMB analysis in choosing a treatment regimen for NSCLC.
Medscape Oncology
First-in-Class Drug Against CD79b Improves Survival in DLBCLFirst-in-Class Drug Against CD79b Improves Survival in DLBCL
The first-in-class antibody-drug conjugate polatuzumab vedotin significantly improved response and overall survival in relapsed or refractory diffuse large B-cell lymphoma.
Medscape Medical News
MD Anderson Cancer Center Fined $4.3M for HIPAA ViolationsMD Anderson Cancer Center Fined $4.3M for HIPAA Violations
The HHS Office of Civil Rights has levied a hefty $4.3 million fine on the MD Anderson Cancer Center for failing to encrypt patient electronic health records.
Medscape Medical News
Immunotherapy Cost Problem May Require 'Revolutionary' RemediesImmunotherapy Cost Problem May Require 'Revolutionary' Remedies
Can the meteoric costs associated with immunotherapy be reined in? Drs Weber and Hamid discuss solutions for this 'really difficult problem.'
Medscape Oncology
Managing Patients' Belief That 'Precision Medicine Is a Panacea'Managing Patients' Belief That 'Precision Medicine Is a Panacea'
Len Saltz, MD, talks about how precision medicine's promise has been overhyped, particularly for many cancer patients.
Medscape Oncology

 

 
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