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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

Channel: News4Sites - Hematology
Blood Testing, Mosquito Style
Sciencedaily.com - Sat Apr 25, 07:30 pm GMT
Defense says new blood test clears Texas man
Ksla.com - Sat Apr 25, 06:15 pm GMT
Health Tip: Blood Tests During Pregnancy
Wave3.com - Thu Apr 23, 02:12 pm GMT
Blood test 'would've saved Bethany's life'
Metro.co.uk - Wed Apr 22, 02:19 pm GMT
Urology clinic jammed with patients seeking blood tests
Siouxcityjournal.com - Fri Apr 17, 07:20 pm GMT
Businessman Exposed Problems With Quest Subsidiary's Blood Test Kits; Led to $302 Million Settlement
Biz.yahoo.com - Wed Apr 15, 06:20 pm GMT
Sun Sentinel Watch: Insurer's mistake results in big bill for blood tests
Sun-sentinel.com - Tue Apr 14, 06:57 pm GMT
Blood Tests Reveal Tobacco Smoke Residues In Non-smoking New Yorkers
Sciencedaily.com - Thu Apr 9, 06:58 pm GMT
Farrah Fawcett suffering from Hematoma; Wants fans to hold on to hope
Ksla.com - Mon Apr 6, 06:57 pm GMT
Lawyers challenge DWI blood testing
Statesman.com - Sun Apr 5, 04:59 pm GMT
Channel: BloodMed.com News
Anti-coagulants help donor organs
Blood thinning drugs may help protect organs being used for transplantation, according to a new study.
Hope for new CML treatment
Scientists say they may have discovered a new approach to treating chronic myeloid leukemia, aimed at helping to tackle drug resistance.
Lymphoma therapy blow
Hopes for a new treatment for lymphoma have been dashed by the discovery of serious side-effects in laboratory studies, researchers have reported.
Novel drug target for aggressive leukemia
A novel drug is in development for T-cell acute lymphoblastic leukemia, it has been announced.
New doubt over power line childhood leukemia link
Doubt has been cast over theories that air pollution caused by overhead power lines is linked to the development of childhood leukemia.
Hope for proliferative disease
Researchers have offered new hope for a treatment for myeloproliferative neoplasms.
Genome editing 'cures' hemophilia in mice
A new way to "edit" genomes has enabled mice to be cured of hemophilia, giving hope among researchers looking to cure genetic disease.
Call for elderly blood cancer boost
A plea for improved care for elderly patients who suffer from myelodysplastic syndromes has won support.
Fresh blood best for surgery transfusion - study
Patients undergoing heart surgery fare much better through having transfusions from newly-donated blood, according to a new study.
Europe to test Ebola blood treatment
Some patients infected with the Ebola virus have been treated with blood transfusions - and now a major European research project has been launched to test the treatment.
Channel: NBC News Health
New Ebola Vaccine Trial Starts in Baltimore
This is part of a flurry of efforts to kick-start stalled Ebola vaccine trials in the hope of using some soon to fight the epidemic in West Africa.






Ebola Epidemic Not Even Close to Over, UN Officials Say
There may be signs of hope in Liberia, but the Ebola epidemic is getting worse, and it will to take a lot more work to control it, UN officials say.






Violence Against Women 'Unacceptably High,' Experts Say
Rates of violence against women remain unacceptably high around the world and countries are doing far too little to stop it, experts argue.






TODAY's Geist and Daly Undergo Live Testicular Exams
The TODAY hosts had the exams live on national television to help raise awareness about the disease.






WHO Reports Plague Outbreak in Madagascar
Plague is spreading in many parts of Madagascar, the World Health Organization says, and a weak health care system means it may spread farther.






The Hidden Downsides of a Gluten-Free Diet
A new Consumer Reports article finds gluten-free foods are more expensive and caloric.






'Zoning Out Really Bad': Narcolepsy Video Goes Viral
As Sarah Wheaton stands in front of the camera, her legs buckle and she falls to the floor. Soon, her head sinks into her chest as she slips into a nap.






'Ripped Apart': Men Experience Pain of Childbirth
A Chinese hospital is giving men a taste of the pain of childbirth. "It felt like my heart and lungs were being ripped apart," one volunteer said.






WATCH: Men Experience the Pain of Childbirth
A hospital in eastern China is offering fathers-to-be a chance to experience the pain of childbirth through electric shock treatment.






New Ebola Vaccine Trial Starts in Baltimore
This is part of a flurry of efforts to kick-start stalled Ebola vaccine trials in the hope of using some soon to fight the epidemic in West Africa.






Channel: Medscape Hematology-Oncology Headlines
Improving Care: New UK Guidance Improving Care: New UK Guidance
Guidance for UK general practitioners on identifying and referring patients suspected of having cancer has been updated for latest draft consultation.
Medscape Medical News
In NEJM, Clues to Which Melanomas Respond to ImmunotherapyIn NEJM, Clues to Which Melanomas Respond to Immunotherapy
When it works, immunotherapy such as ipilimumab can work extraordinarily well. New research provides insights into why some patients with metastatic melanoma respond to ipilimumab while others remain unresponsive.
Medscape Medical News
Survival in Melanoma Ups Further: 'We Have Cure in Our Sights' Survival in Melanoma Ups Further: 'We Have Cure in Our Sights'
With the avalanche of news of drugs approved recently for metastatic melanoma, survival keeps increasing, and there is now talk of cure.
Medscape Medical News
Germline Genetics in Cancer: From Screening to TreatmentGermline Genetics in Cancer: From Screening to Treatment
At ESMO, experts in cancer genetics discussed the role that germline genetic mutations play in screening and treatment decisions, as well as the potential that these mutations hold as drug targets.
Medscape Oncology
Crizotinib Highly Active in ROS1-Mutated Lung CancerCrizotinib Highly Active in ROS1-Mutated Lung Cancer
The ALK inhibitor shows potent antitumor activity in a second subgroup of non-small cell lung cancer, in patients with advanced ROS1-rearranged tumors.
Medscape Medical News
Why Are Drug Costs So High in the United States?Why Are Drug Costs So High in the United States?
Drug prices are higher in the United States than anywhere else in the world; many critics feel that it is not sustainable and it is time to change the status quo.
Medscape Medical News
Mastectomy Rates on the Increase in Early Breast CancerMastectomy Rates on the Increase in Early Breast Cancer
More and more women with early breast cancer are undergoing mastectomy, breast reconstruction, and bilateral mastectomy, latest US study confirms.
Medscape Medical News
Uterine Leiomyosarcoma: Rare Tumor in Clinical TrialsUterine Leiomyosarcoma: Rare Tumor in Clinical Trials
Dr Martee Hensley discusses the difficulty in differentiating benign uterine fibroids from malignancy, the controversy over morcellation, and initiatives undertaken to manage uterine leiomyosarcoma.
Medscape Oncology
7 Takeaways From the ACCC National Oncology Conference7 Takeaways From the ACCC National Oncology Conference
From the value of clinical pathways to digital survivorship plans, Dr Cary Presant highlights the most important topics presented at the ACCC National Oncology Conference in October.
Medscape Oncology
Advanced Esophageal Cancer Patients Offered New HopeAdvanced Esophageal Cancer Patients Offered New Hope
A targeted treatment has proven effective for advanced esophageal cancer for the first time, after patients identified by a simple test responded to therapy.
Medscape Medical News

 

 
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