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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

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
Two genes closely linked to cancer
New discoveries have been made on the genetic causes of certain forms of cancer.
HIV only hiding, not cured
HIV may be able to hide for years in people who seem to be cured of infection, according to a new study.
Calcium tests to detect cancer?
Blood tests for high calcium levels could be used to detect a range of cancers at an early stage, researchers have revealed.
New hope for myeloma drug
British scientists may have found a drug that could tackle multiple myeloma without causing serious side-effects, it was announced last night.
SCID gene therapy 'effective and safe'
A new gene therapy for "bubble boy" disease appears to be both effective and safe, an international clinical trial has found.
Blood cell origins uncovered
New findings are challenging long-held beliefs about the origins of blood cells in the human body.
Neonatal Haematology
Video presentation by Irene Roberts, Professor of Paediatric Haematology, University of Oxford, John Radcliffe Hospital
Platelets affected by their environment
Scientists have found that platelets alter their clotting action depending on the environment they find themselves in.
Breast implant link to rare cancer
Breast implants may trigger the development of a rare kind of cancer in some women, researchers have found.
HIV epidemic began in 20s
The modern HIV epidemic began in Kinshasa, now the capital of the Democratic Republic of Congo, in the early 1920s, according to a new study published.
Channel: NBC News Health
Is Your Favorite on the 10 Foods to Avoid List?
A consumer advocacy group presents ?the worst America?s food manufacturers and restaurants have to offer."

Watch Live: The Texas Task Holds Hearing on Ebola Preparedness
The Texas Task Force on Infectious Disease Preparedness and Response holds its first hearing, focusing on preparedness for initial identification and isolation of patients with Ebola.

Now There's an Uber for Flu Shots
Uber is bringing back the house call for flu vaccinations.

Just a Bite: Why Sharing Cake Makes You Feel Better
Want to feel better about eating that luscious piece of chocolate cake? Here?s one way to make it guilt-free: Have a friend invite you to share it.

Overweight Women Tend To Earn Less Pay: Study
A new study shows obese females tend to occupy lower-paying, more-strenuous jobs when compared to average-sized women and men in the workforce.

How NBC News Freelancer Survived Ebola
Being young and healthy helped Ashoka Mukpo pull through Ebola, but he?ll be weak for months, doctors who treated him said Wednesday.

Lessons Learned: NBC News Freelancer's Ebola Story
'I can feel my strength coming back every day,' says the NBC News freelancer who contracted Ebola in Liberia and was declared virus-free Tuesday.
New Testing Starts on Experimental Ebola Vaccine
U.S. health officials say they've started human testing of another new Ebola vaccine at a government-run hospital outside Washington.

Ashoka Mukpo Statement: 'Today is a Joyful Day'
Jeffrey Gold, Chancellor of the University of Nebraska Medical Center, announces that Ebola patient Ashoka Mukpo has been declared free of the Ebola virus, and released. Gold then reads a statement from Mukpo.

Feds Probe Medical Devices for Possible Cyber Flaws
Reuters suorces said they do not know of instances of hackers attacking patients through these devices, so the cyber threat should not be overstated.

Channel: Medscape Hematology-Oncology Headlines
'Co-Rounding' Cuts Inpatient Oncology Stays, Readmissions'Co-Rounding' Cuts Inpatient Oncology Stays, Readmissions
In a new study, palliative care specialists and medical oncologists shared responsibility for cancer patients on a hospital floor, and good things happened.
Medscape Medical News
Money Woes Spawn Cancer Patient Treatment ShortcutsMoney Woes Spawn Cancer Patient Treatment Shortcuts
Even if they have insurance, cancer patients often struggle with out-of-pocket costs and, as a result, make changes to their lifestyle and treatment regimens.
Medscape Medical News
Genetic Test Showing Increased CRC Risk Prompts No ActionGenetic Test Showing Increased CRC Risk Prompts No Action
Individuals who were shown by genetic testing to be at increased risk for colorectal cancer (CRC) did not increase screening.
Medscape Medical News
Got Colon Cancer, Get Milk?Got Colon Cancer, Get Milk?
Dr Alok Khorana reports on a study indicating that increased milk and calcium intake is associated with improved outcomes after diagnosis of colorectal cancer.
Medscape Oncology
EHRs Not Living Up to the HypeEHRs Not Living Up to the Hype
In a Medscape survey, one third of oncologists said electronic health records made patient services worse, and two thirds said they took away face-to-face time with patients.
Medscape Oncology
Prostate Brachytherapy Has Good Long-term OutcomesProstate Brachytherapy Has Good Long-term Outcomes
Dr Gerald Chodak reviews a new study reporting extremely favorable long-term outcomes with brachytherapy for prostate cancer, but as usual, there are important caveats.
Medscape Urology
Solution to US Cancer Care 'Crisis' Is Less Cancer CareSolution to US Cancer Care 'Crisis' Is Less Cancer Care
There is a need to revise the disease-centric approach that requires that all cancers be treated, regardless of age, comorbidities, and likely side effects. Overall well-being should be paramount, say a pair of reformers.
Medscape Medical News
CAR T-Cells in Leukemia: Expert CommentaryCAR T-Cells in Leukemia: Expert Commentary
An expert comments on the dramatic results that were reported this week with chimeric antigen receptor (CAR)-modified T-cells in patients with relapsed acute lymphoblastic leukemia.
Medscape Medical News
Neil Shah, MD, PhD: How I Treat Chronic Myeloid LeukemiaNeil Shah, MD, PhD: How I Treat Chronic Myeloid Leukemia
Jerald Radich, MD, poses a series of questions on the management of chronic myeloid leukemia to Neil Shah, MD, PhD, who describes his approach to managing the disease.
Medscape Oncology
Advanced Lung Cancer Missed in Primary Care Advanced Lung Cancer Missed in Primary Care
An analysis of more than 20,000 lung cancer cases in the United Kingdom shows that the diagnosis is being missed by primary care physicians.
Medscape Medical News


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