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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
Is Irritable Bowel Syndrome Fatal?
Doctors say it's unlikely that irritable bowel syndrome played a role in the death of 'Project Runway' finalist Mychael Knight.
Moral Qualms Halt Needle Exchange in Indiana County
An Indiana County has stopped a needle exchange program set up to fight outbreaks of HIV fueled by the opioid epidemic.
Black, Latino Kids Less Likely to Get Help for Developmental Delays
Black and Latino children with developmental delays are much less likely than white children to receive the early intervention services they need.
A Silent Epidemic of Cancer Is Spreading Among Men
Almost everyone gets this virus and oral sex spreads it.
Trump Taking Second Look at Drug Czar Nominee After Report
Trump weighed-in on Rep. Tom Marino, his nominee to head the Office of National Drug Control Policy, following a report that revealed Marino's role in pushing through the drug industry-backed Ensuring Patient Access and Effective Drug Enforcement Act.
Philando Castile Fund Pays School Lunch Debts
Philando Castile legacy fund raises over $75,000 to pay off student lunch debts in schools across St. Paul, Minnesota.
Could Your Health Insurance Be Costing You Money at the Pharmacy?
Because of "clawbacks," many consumers pay extra for some of the most commonly prescribed drugs ? medicine for depression, cholesterol and high blood pressure.
What Dolphins and Whales Teach Us About Gossip
A study of whale and dolphin brains show it's not size that matters, but socializing. The more social an animal is, the bigger its brain.
Toddler's Kidney Transplant Delayed After Father Is Arrested
The child's fate remains in limbo, the family says, because of apparent red tape between the hospital and police.
The 'Jolie Effect': How Celebrities Influence Our Medical Decisions
According to a new study, Hollywood has a big impact on how we seek treatment for health conditions.
Channel: Medscape Hematology-Oncology Headlines
Sperm Banking Underutilized in Young Male Cancer PatientsSperm Banking Underutilized in Young Male Cancer Patients
Fertility preservation is an important aspect of cancer care, but young male cancer patients are underutilizing sperm banking.
Medscape Medical News
FDA Approves Second CAR T-Cell TherapyFDA Approves Second CAR T-Cell Therapy
The second therapy of this innovative immunotherapy has received FDA approval to treat patients with relapsed/refractory aggressive B-cell NHL.
FDA Approvals
A Strategic Merger in Cancer ScreeningA Strategic Merger in Cancer Screening
A recent study relates future risk to current risk for advanced colorectal cancer. Dr Kerr suggests adding genetic testing to further improve diagnosis.
Medscape Oncology
Long-term Survival Happens With Targeted Rx in MelanomaLong-term Survival Happens With Targeted Rx in Melanoma
Long-term follow-up of metastatic melanoma patients treated with a BRAF and MEK inhibitor combination shows some patients survive 5 years, especially those with good prognostic features at baseline.
Medscape Medical News
Generic vs Brand Bone Drug for Breast Cancer, Skeletal MetsGeneric vs Brand Bone Drug for Breast Cancer, Skeletal Mets
Monthly denosumab more effective than zoledronic acid in delaying time to first skeletal-related events but over 2 years cost almost $350K more.
Medscape Medical News
Oncology Most Stressful of Specialties: High Risk for BurnoutOncology Most Stressful of Specialties: High Risk for Burnout
A clinical psychologist working at a large cancer center warns that oncologists are particularly vulnerable to burnout, and suggests ways of building resilience.
Medscape Medical News
To Prevent Ovarian Cancer, Focus on the Fallopian Tube To Prevent Ovarian Cancer, Focus on the Fallopian Tube
New data support the rationale to focus on the distal fallopian tube when considering surgical or medical approaches to prevent high-grade serous ovarian cancer, researchers say.
Medscape Medical News
'Massive' Suffering: Pain Relief in Less Affluent Countries'Massive' Suffering: Pain Relief in Less Affluent Countries
In much of the world, patients suffering from serious illness and injury have little to no access to palliative care and adequate pain relief.
Medscape Medical News
New Study Confirms Bariatric Surgery Lowers Cancer Risk in Women New Study Confirms Bariatric Surgery Lowers Cancer Risk in Women
Bariatric surgery has again been shown to lower cancer risk in severely obese women compared with matched nonsurgical controls, primarily via a reduction in risk of obesity-specific carcinomas.
Medscape Medical News
Lung Cancer Community: 'This Is Our Fight'Lung Cancer Community: 'This Is Our Fight'
At the premier gathering of the lung cancer community, the first plenary session speaker insisted: 'We cannot deal with lung cancer and not fight against tobacco.'
Medscape Medical News


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