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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

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
FDA Approves Nivolumab (Opdivo) for Small Cell Lung CancerFDA Approves Nivolumab (Opdivo) for Small Cell Lung Cancer
The new approval is accelerated and is therefore conditional upon further proof of efficacy, but the checkpoint inhibitor becomes the first approved option in advanced SCLC in a long time.
FDA Approvals
No Benefit From RAI After Second Thyroid Cancer SurgeryNo Benefit From RAI After Second Thyroid Cancer Surgery
Patients with recurrent thyroid cancer who undergo a second operation do not experience a reduction in subsequent recurrence if they receive postoperative radioactive iodine (RAI), say US investigators.
Medscape Medical News
5 Things to Know About Chronotherapy5 Things to Know About Chronotherapy
With the 2017 Nobel Prize in Medicine being awarded to research on circadian rhythms, the time has come to take a look at synchronizing chemotherapy with the body's natural clock. Here are five things you should know about chronotherapy.
Medscape Oncology
Weight Gain Doesn't Diminish Benefits of Giving Up Smoking Weight Gain Doesn't Diminish Benefits of Giving Up Smoking
Risk for type 2 diabetes rises temporarily for people who gain weight when they quit smoking, but cardiovascular benefit stays steady regardless.
Medscape Medical News
FDA Approves Lenvatinib (Lenvima) for Liver Cancer FDA Approves Lenvatinib (Lenvima) for Liver Cancer
The oral therapy lenvatinib joins sorafenib as the only drugs approved for first-line treatment of patients with unresectable hepatocellular carcinoma.
FDA Approvals
KEYNOTE-224: Pembrolizumab Active, Tolerable in HCCKEYNOTE-224: Pembrolizumab Active, Tolerable in HCC
Dr David Kerr discusses the safety and efficacy of pembrolizumab in patients with pretreated, advanced HCC.
Medscape Oncology
'Compelling' Regimen for Resectable Advanced-Stage Melanoma'Compelling' Regimen for Resectable Advanced-Stage Melanoma
Dr Weber reviews a new trial comparing neoadjuvant and adjuvant dual MEK/BRAF inhibition to standard of care in advanced resectable melanoma.
Medscape Oncology
PARP Inhibitor Talazoparib Benefit in BCRA+ Breast CancerPARP Inhibitor Talazoparib Benefit in BCRA+ Breast Cancer
The now published results from the EMBRACA study confirm that talazoparib prolongs progression-free survival in advanced BCRA-positive breast cancer.
Medscape Medical News
'An Inconvenient Truth': Add Bev or Chemo to TKIs in Lung Cancer'An Inconvenient Truth': Add Bev or Chemo to TKIs in Lung Cancer
What agents can you combine with a TKI to improve progression-free survival in EGFR-mutant lung cancer? Dr Mark Kris discusses recent data from ASCO on this topic.
Medscape Oncology
IBM Watson Oncology: Not Living Up to ExpectationsIBM Watson Oncology: Not Living Up to Expectations
The supercomputer has been marketed aggressively as a tool to help oncologists make treatment decision, but some of its recommendations were both 'unsafe and incorrect.'
Medscape Medical News


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