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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
Trans Students Face 'Detrimental' Health Effects Without Fed Protection
Health professionals fear the Trump administration's decision to rescind past guidance on trans protections could lead to 'detrimental' health effects for trans kids.
Superbugs Grow in Hospital Plumbing: Study
Antibiotic-resistant superbug bacteria grow up hospital drains and can splash out into sinks and onto counters, researchers reported Friday.
GOP Draft Health Care Bill Cuts Medicaid, Insurance Subsidies
A GOP draft bill to begin repealing and replacing Obamacare includes cuts in spending on Medicaid, increases on top-shelf health plans.
Deadly Heroin Overdoses Quadrupled in Last 5 Years
The number of deadly heroin overdoses in the United States more than quadrupled from 2010 to 2015, a government agency said Friday.
New Drugs May Stop Migraines Before They Start
Relief may be on the horizon for people suffering from migraines.
Boehner Gives Obamacare Repeal Long Odds
If Republicans repeal Obamacare without a substitute, "anything that happens is your fault. You broke it," former House Speaker John Boehner said.
Addicts Given Opioids Alongside Treatment, Study Finds
Two-thirds of people prescribed a drug usually used to treat opioid addiction get more of the addictive drugs after treatment, researchers say.
Could Infections Cause Autism?
A new study supports the argument that infections during pregnancy may cause some cases of autism.
New Group Takes on Drug Prices and Big Pharma
It's a good time to be an advocate for lower drug prices. A cancer patient with a $26,000 per month drug bill thinks he's right for the cause.
Rare Disease Makes Woman Allergic to Her Husband
A rare and progressive immunological disease has forced 30-year-old Johanna Watkins to live in isolation in her home.
Channel: Medscape Hematology-Oncology Headlines
Low Recurrence After Risk-Reducing Surgery for BRCA CarriersLow Recurrence After Risk-Reducing Surgery for BRCA Carriers
Dr Maurie Markman discusses the results of an RRSO surgery study showing a 1% incidence rate in long-term follow-up of subsequent peritoneal cancer.
Medscape Oncology
Practice Pearls: Checkpoint Inhibitors for Lung CancerPractice Pearls: Checkpoint Inhibitors for Lung Cancer
Dr Mark Kris reviews the challenges of using newly approved immunotherapies for lung cancer patients, especially how to identify patients who will benefit and monitor their progress.
Medscape Oncology
Lenalidomide Approved for Myeloma Maintenance After HSCT Lenalidomide Approved for Myeloma Maintenance After HSCT
Lenalidomide (Revlimid) gets the first-ever FDA approval for use in myeloma as a maintenance therapy after autologous stem cell transplant.
FDA Approvals
Third of Oncologists Report High Burnout; 30% Turn to Alcohol Third of Oncologists Report High Burnout; 30% Turn to Alcohol
A meta-analysis of data from 4876 oncologists found that a third reported high burnout, or emotional exhaustion, and 30% reported drinking alcohol in a problematic way.
Medscape Medical News
Costs Drive Prescription Changes in Cancer SurvivorsCosts Drive Prescription Changes in Cancer Survivors
Financial concerns are a major reason why cancer survivors change their prescription drugs, and why they do so at a higher rate than the general population.
Medscape Medical News
Saving Arms and Legs in Advanced Soft Tissue SarcomasSaving Arms and Legs in Advanced Soft Tissue Sarcomas
In patients with soft tissue sarcoma facing amputation of an arm or a leg, regional chemotherapy with isolated limb infusion treats local disease without affecting survival.
Medscape Medical News
Big Data Bust: MD Anderson-Watson Project DiesBig Data Bust: MD Anderson-Watson Project Dies
MD Anderson's artificial intelligence project with IBM, which sought to 'elevate the standard of cancer care world-wide,' has fizzled out, after costing at least $62 million.
Medscape Medical News
Tattoos Help Breast Cancer Patients Heal After MastectomyTattoos Help Breast Cancer Patients Heal After Mastectomy
Artist David Allen empowers women who have had their breasts removed to feel a sense of control over their lives by drawing beautiful images over their mastectomy scars.
Medscape Medical News
ASTRO Guideline Update on Palliative Radiation for Bone MetsASTRO Guideline Update on Palliative Radiation for Bone Mets
The updated guidelines continue to recommend four dosing schedules for palliative radiation, but some experts question whether more weight should be given to the single-dose option.
Medscape Medical News
Fatal Neutropenic Enterocolitis With Docetaxel in France Fatal Neutropenic Enterocolitis With Docetaxel in France
Five fatal cases of neutropenic enterocolitis associated with a generic version of docetaxel have led one cancer centre to swap the drug for paclitaxel.
Medscape Medical News

 

 
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