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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
Royal Free FRCPath Intensive Practical Course in Haemostasis March 2015 dates announced
This course will cover all aspects of clinical and laboratory haemostasis. It is particularly aimed at trainees preparing for the practical FRCPath examination but is also suitable for clinicians and scientists wishing to gain intensive training in haemostasis.
Protein fusion creates new leukemia magic bullet hope
A protein-based therapy could be used to tackle drug-resistant leukemia, researchers reported yesterday. The treatment could also be used to "amplify" chemotherapy and radiotherapy, according to the developers. Researchers have developed a "fusion" protein, aimed at making a previously abandoned treatment effective. Researchers have previously tried to use the body's natural cell death cycle, using the protein TNF-related apoptosis-inducing ligand or TRAIL, as a cancer treatment. They believe their latest discovery will make this work by ensuring it attacks cancer cells only. It arises from their discovery of the CD19-Ligand, expressed by almost all acute lymphoblastic leukemia cells. They have successfully fused this to TRAIL, creating CD19L-sTRAIL. So far the discovery has been tested successfully in trials on laboratory mice, the researchers report in the Journal of Clinical Investigation. Researcher Professor Fatih Uckun, of the University of Southern California, USA, said: "Due to its ability to anchor to the surface of cancer cells via CD19, CD19L-sTRAIL was 100,000-fold more potent than sTRAIL, and consistently killed more than 99 percent of aggressive leukemia cells taken directly from children with ALL - not only in the test tube, but also in mice. "We are hopeful that the knowledge gained from this study will open a new range of effective treatment opportunities for children with recurrent leukemia."
Immune system Rosetta Stone unveiled
Swiss scientists say they have found the "Rosetta Stone" of the immune system, opening the way to unlock its secrets.
Hematologist wins backing for cancer treatment
A hematologist is at the centre of a deal worth millions of pounds aimed at testing and commercializing a powerful new anti-cancer treatment.
John Goldman Fellowships for Future Science
John Goldman (1938 - 2013) was a renowned haematologist and a pioneer in the treatment of leukaemia. His charity, Leuka, has created a fellowship programme aimed at those with a passion for science and a desire to translate scientific advances into clinical practice. Leuka is pleased to invite applications for the first of its John Goldman Fellowships for Future Science awards.
BloodMed Reader offer - Save 100 on standard course fees - Book by 20 February 2015 - Lymphoma management training course 23-24 March 2015 supported by Lymphoma Association & Oxford University Hospitals NHS Trust.
Meeting date: 23 March 2015-24 March 2015 Meeting location / meeting documentation: Keble College, University of Oxford, Parks Road, Oxford OX1 3PG
Call for drugs to tackle new cancer target
Drugs need to be developed to target a protein that is "critical" to T-cell lymphoma, researchers say.
Hope for iron disease treatment
Scientists have successfully created a molecule to mimic the hormone that is responsible for controlling iron levels in the body, it has been announced.
Gene breakthrough in leukemia
Researchers say new discoveries highlight the critical role of a gene in the development of acute myeloid leukemia.
Germans question blood cancer drug evidence
A new drug for blood cancer has failed to impress assessors in Germany, where experts say developers have failed to supply enough information.
Channel: NBC News Health
Disney Measles Outbreak Came From Overseas: CDC
An outbreak of measles that started in California's Disneyland probably came from overseas, officials say.






With Just a Few New Cases of Ebola, Liberia's Kids Head Back to School
There's some good news out of the Ebola epidemic.






Buzz Kill: Three Daily Alcohol Drinks May Boost Stroke Risk
People in their 50s and 60s who down more than two drinks daily have a 34 percent higher stroke risk compared to lighter drinkers, researchers say.






Here's Where the Public Disagrees With Scientists
A survey suggests that scientists disagree with the wider public on key scientific issues ? and are becoming less hopeful about closing the gap.






What's it Like To Be Trapped in Unresponsive Body?
Fully conscious, but unable to move and seemingly unresponsive, Martin Pistorius could not blink, grimace, gesture or make sounds.






'Ghost': Man Recalls Years Trapped in Unresponsive Body
Fully conscious, but unable to move and seemingly unresponsive, Martin Pistorius could not blink, grimace, gesture or make sounds.






'Toxic Aerosol': California Calls Vaping a Public Health Risk
California health officials issued a public health advisory Wednesday, urging the state's residents to avoid or stop using e-cigarettes.






California Declares Vaping Public Health Risk
California health officials issued a public health advisory Wednesday, urging the state's residents to avoid or stop using e-cigarettes.






Children Still Struggle With Mystery Paralysis
Ten Colorado children with mystifying muscle weakness and partial paralysis are still suffering symptoms and may be permanently disabled, doctors say.






Memory Problems Worse for NFL Vets Who Played as Kids
NFL vets who started playing football before age 12 functioned about 20 percent worse on mental tests compared to ex-pros to entered the game as teens






Channel: Medscape Hematology-Oncology Headlines
Breast Cancer Treatment: Quiet 100 Years, Then BoomBreast Cancer Treatment: Quiet 100 Years, Then Boom
A timeline of developments in the treatment of breast cancer reveals great change in the past 20 to 30 years, according to two experts.
Medscape Medical News
Colorectal Cancer Disparities: 'We Should Be Embarrassed'Colorectal Cancer Disparities: 'We Should Be Embarrassed'
People with the least education in the United States have the highest rate of premature death due to colorectal cancer, regardless of race, ethnicity, or the state they live in.
Medscape Medical News
Precision Medicine: Targeted Drugs and ImmunotherapyPrecision Medicine: Targeted Drugs and Immunotherapy
'Precision medicine' has become a catchphrase since it was mentioned by President Obama last week, but oncologists are already using this approach.
Medscape Medical News
EGFR Mutant Lung Cancer: Lessons From ASPIRATION and IMPRESSEGFR Mutant Lung Cancer: Lessons From ASPIRATION and IMPRESS
Dr Mark Kris discusses the switch from first- to second-line therapy for EGFR mutant lung cancers in light of two studies presented at the most recent ESMO meeting.
Medscape Oncology
Indiana Medicaid Expansion May Tempt Other GOP-Led StatesIndiana Medicaid Expansion May Tempt Other GOP-Led States
The deal reached Tuesday between the Obama administration and Indiana Gov. Mike Pence to expand Medicaid under the president?s health law should help sway reluctant Republican officials in other states because it imposes new costs on poor adults, promotes healthy behaviors and relies on financing from smokers and hospitals instead of state taxpayers.
Kaiser Health News
Genetic Variant Linked to Drug Intolerance in Acute LeukemiaGenetic Variant Linked to Drug Intolerance in Acute Leukemia
Children with acute lymphoblastic leukemia harboring the NUDT15 variant required a significant dose reduction of mercaptopurine, a mainstay of curative therapy.
Medscape Medical News
Cancer Death Rates Continue Falling in EU, With 2 ExceptionsCancer Death Rates Continue Falling in EU, With 2 Exceptions
Cancer mortality rates are continuing to fall across the European Union (EU), with two notable exceptions: lung cancer in women and pancreatic cancer.
Medscape Medical News
MR/Ultrasound Biopsy Detects More High-Risk Prostate CancersMR/Ultrasound Biopsy Detects More High-Risk Prostate Cancers
Adding MRI to ultrasound-guided biopsy for prostate cancer discovered more high-risk cancers and fewer low-risk cancers.
Medscape Medical News
Why Patients Ignore Cancer 'Alarm' SymptomsWhy Patients Ignore Cancer 'Alarm' Symptoms
A British survey probed the reasons people recognize but ignore 'alarm' symptoms that could indicate cancer; some British 'stiff upper lip' is involved.
Medscape Medical News
Docs 'Astonished': ED Drugs Tied to Prostate Cancer ReturnDocs 'Astonished': ED Drugs Tied to Prostate Cancer Return
The erectile dysfunction (ED) drugs often used after radical prostatectomy might increase the rate of the cancer's biochemical recurrence.
Medscape Medical News

 

 
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