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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
Rohingya refugees tell harrowing tales of rape
Violent rape is so common for Rohingya Muslim refugees fleeing Myanmar that women talk about it openly, startled aid workers say.
The emotional risks of gifting DNA gene tests
Home DNA tests are marketed as way families can learn genetic risks for everything from Parkinson's to Alzheimer's. What if some don't want to know?
When breaking news is breaking you: How to cope with the 24/7 news cycle
Breaking news is breaking us. Here's how to stay informed without damaging your mental health.
Judge temporarily blocks new Trump rules on birth control
A federal judge issued the injunction, temporarily stopping the government from enforcing the policy change to former President Obama's health care law.
What 5 months of consistent, healthy weight loss looks like
There is no magic switch that makes you suddenly love running and eating kale. Here's how Daniel J. Green found weight-loss success, one step at a time.
Flu season hits early this year
The U.S. may be in for an early and dangerous flu season, with influenza already more widespread than it was this time last year, the CDC says.
Today is the last day to buy ACA insurance
Despite endless repeal efforts, millions are signing up for health insurance on the Obamacare markets in the final days of open enrollment, and finding bargains
Asian Americans don't get treated for alcoholism. This group wants to change that for South Asians.
South Asian Alcoholics Anonymous meets each thursday in Iselin, New Jersey.
Tax bill kills health insurance mandate
The tax bill being fought over in Congress kills the individual mandate - the unpopular Obamacare provision that required everyone to buy health insurance.
Anxiety signs can feel more physical than mental
Shortness of breath, racing heart and tremors could be signs of anxiety
Channel: Medscape Hematology-Oncology Headlines
Chemotherapy or Palliative Care: How to Decide?Chemotherapy or Palliative Care: How to Decide?
The sign of a mature oncologist is knowing when not to treat someone, says Dr Kerr. A new tool may bolster that knowledge.
Medscape Oncology
Exercise Proven, but Underused, for Breast Cancer FatigueExercise Proven, but Underused, for Breast Cancer Fatigue
Despite the fact that studies have consistently shown that exercise reduces breast cancer fatigue, many physicians do not discuss exercise programs with their breast cancer patients.
Medscape Oncology
Hormonal Therapy in Advanced Endometrial CancerHormonal Therapy in Advanced Endometrial Cancer
This meta-analysis may finally clarify which patients are most likely to respond to hormonal therapy.
Medscape
New Potential Drug Therapy for AI-Associated ArthralgiaNew Potential Drug Therapy for AI-Associated Arthralgia
The anti-depressant duloxetine effectively reduced musculoskeletal symptoms early in the course of treatment with aromatase inhibitors for early-stage breast cancer.
Medscape Oncology
FDA Reaffirms Advice Against Use of Morcellators for FibroidsFDA Reaffirms Advice Against Use of Morcellators for Fibroids
An updated review leads the FDA to reaffirm their recommendation against the use of power morcellators to remove uterine fibroids in most women.
News Alerts
Teen Acne Tied to Prostate Cancer RiskTeen Acne Tied to Prostate Cancer Risk
Swedish researchers report an association between acne -- particularly severe acne -- in the late teen years and later prostate cancer risk, a finding that validates other research.
Medscape Medical News
'Stepping Back From the Hype': A Critical Look at NGS'Stepping Back From the Hype': A Critical Look at NGS
In the absence of clinical data to guide treatment decisions, oncologists should question whether identifying more tumor targets is inherently better, argues Dr Jack West.
Medscape Oncology
Daratumumab Ready to Move to Front Line in Multiple MyelomaDaratumumab Ready to Move to Front Line in Multiple Myeloma
The first phase 3 trial in patients with newly diagnosed multiple myeloma found that daratumumab significantly improved progression-free survival when combined with triple therapy.
Medscape Medical News
Oral Edoxaban a New Alternative for VTE in Cancer Patients?Oral Edoxaban a New Alternative for VTE in Cancer Patients?
Edoxaban is on its way to becoming a new standard of care for cancer-associated venous thromboembolism (VTE), having shown noninferiority to dalteparin in a large randomized trial.
Medscape Medical News
AI Ups Precision in Breast Cancer PathologyAI Ups Precision in Breast Cancer Pathology
In a challenge of diagnostic accuracy and precision in metastatic breast cancer, artificial intelligence (AI) outperformed pathologists at reviewing and interpreting whole-slide images.
Medscape Medical News

 

 
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