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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
Trump targets Planned Parenthood with new abortion rule
Groups like Planned Parenthood will be forced to choose between federal funding and offering abortion under the same roof as other services.
How to talk to your kids about school shootings
How to help your kids feel safe when their world feels out of control.
Pee in the pool? That's not all
Hotel pools and spas cause a third of pool-linked disease outbreaks
Latest Ebola outbreak just spread to a large city
Vaccines have arrived for a first round of immunization but a case in a city is a "game changer"
Bill Gates reveals Trump's confusion between HIV and HPV
The billionaire Microsoft founder also said it was "kind of scary how much he knew about my daughter's appearance."
New drug may prevent migraines
When other medications have failed, new injection treatment may help some patients with disabling headaches.
The best exercise to tone each one of your trouble spots
Target your abs, glutes and arms ? or combine all five movements for a total-body tone up.
FDA shames firms fighting generic competitors
List is meant to aid "transparency", FDA says
Opioid crisis makes more organs available
Organs from overdose victims are safe, studies show
More teens attempt suicide. It's not clear why.
Rates go up during the school year, plummet during summer. Experts wonder about social media's role.
Channel: Medscape Hematology-Oncology Headlines
'Notable Differences' With 3 Prostate Cancer Genomics Tests'Notable Differences' With 3 Prostate Cancer Genomics Tests
In a novel study, the three leading prostate cancer genomics tests, which are used to help stratify favorable-risk cancers and to aid decision-making about active surveillance, were compared.
Medscape Medical News
Cabozantinib Looks Promising for Malignant PheochromocytomaCabozantinib Looks Promising for Malignant Pheochromocytoma
Tyrosine kinase inhibitor may offer several benefits to patients with malignant pheochromocytomas and paragangliomas, very rare forms of cancer that are difficult to treat.
Medscape Medical News
Trial 'Desperately Needed' to Sequence Immunotherapy and Chemo in Lung CancerTrial 'Desperately Needed' to Sequence Immunotherapy and Chemo in Lung Cancer
Thoracic oncologists Drs Jack West and Hossein Borghaei discuss critical questions in the treatment of low-expressing or PD-L1-negative non-small cell lung cancer patients.
Medscape Oncology
Insomnia in Cancer Patients: Interventions That May HelpInsomnia in Cancer Patients: Interventions That May Help
Both cognitive-behavioral therapy and acupuncture can significantly reduce insomnia and improve quality of life of cancer patients, the results of a US randomized trial indicate.
Medscape Medical News
KEYNOTE-189: Chemo + Immunotherapy Now Viable for PD-L1 Low NSCLCKEYNOTE-189: Chemo + Immunotherapy Now Viable for PD-L1 Low NSCLC
While KEYNOTE-189 answered many questions about immuno-oncology for NSCLC, Drs West and Borghaei look forward to results of KEYNOTE-042 for even more answers.
Medscape Oncology
Most Efficient, Less Costly Gene Testing Method for NSCLCMost Efficient, Less Costly Gene Testing Method for NSCLC
For genetic testing of patients with non-small cell lung cancer (NSCLC), next-generation sequencing is less costly than other methods, and results are available much sooner.
Medscape Medical News
Director Resigns as Irish Cervical Screening Scandal EscalatesDirector Resigns as Irish Cervical Screening Scandal Escalates
The cervical cancer screening debacle in Ireland, which involves US pathology labs, continues to escalate and has led to the resignation of a Health Service Executive chief.
Medscape Medical News
'Historic Reversal': No Immediate Tx for Low-Risk Prostate Cancer'Historic Reversal': No Immediate Tx for Low-Risk Prostate Cancer
Use of conservative management for men with low-risk prostate cancer has dramatically increased over the past decade, at least among VA participants.
Medscape Medical News
Better Responses to Immunotherapy in MenBetter Responses to Immunotherapy in Men
When patients with advanced solid tumors are treated with immune checkpoint inhibitors, only men get double the survival benefits seen with standard cancer therapies.
Medscape Medical News
Yes or No to Chemo-IO Combo in High PD-L1 NSCLC Patients?Yes or No to Chemo-IO Combo in High PD-L1 NSCLC Patients?
Thoracic oncologists Drs Jack West and Hossein Borghaei talk about when to add chemotherapy to immunotherapy in high PD-L1-expressing non-small cell lung cancer patients.
Medscape Oncology


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