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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
Improved treatment approved for hemophilia A patients
A new treatment for hemophilia A has been approved for use across Europe, offering a "real milestone" for patients, it has been announced.
Disappointment for thrombus aspiration study
Thrombus aspiration before percutaneous coronary intervention does not improve one year clinical outcomes in patients with non-ST-elevation myocardial infarction, according to the findings of a major European trial.
Genetic locus protects hematopoietic stem cells
A genetic locus plays a vital role in controlling adult stem cells, which could open the door for new possible routes for diagnosing and treating some cancers, a new US study has revealed.
PARP inhibitor hope for leukaemia
PARP inhibitors may be able to help treat acute myeloid leukemia, according to a British study.
Unravelling infection-triggered thrombosis
Scientists have discovered the method by which Salmonella infection can cause life-threatening thrombosis.
Reduce blood transfusions - new guidance
At least 20% of blood transfusions are unnecessary, according to guidelines issued to British doctors.
Self-management of anti-coagulant therapy
New research suggests that patients who have had heart valve surgery achieve better outcomes when they manage their own anti-coagulant therapy.
Autoimmune risk for child cancer survivors
People treated successfully for cancer as children may face a range of health problems later in life - and autoimmune diseases are among them, according to Swedish researchers.
Successful pregnancy after CLL treatment
A woman of 36 has successfully given birth shortly after completing a course of treatment for chronic lymphocytic leukemia, an Italian medical team has reported.
Help for determining blood clot risk
Experts have developed new methods of estimating the risk of venous thromboembolism for people with a leg cast.
Channel: NBC News Health
Can You Tell Which Brains Are Male? Neither Could Scientists
Scientists who tried very hard to find distinct differences between male and female brains say they can't do it.

Gene Editing: Hope for New Cures or Scary Science?
Experts are meeting in Washington to debate the science and ethics of gene-editing.

In Your 20s? It's Time to Get on a Treadmill
A new study shows it's never too soon to get fit.

UK Lawmakers Want Sugar Tax to Fight Obesity
The health committee in Britain's Parliament called for a sugar tax to fight obesity.

Costco Chicken Salad Sickens 19 With E Coli
Nineteen people in seven states are sick with an E coli infection linked to chicken salad from Costco, federal health officials said Tuesday.

FDA Approves New Flu Vaccine With Extra Ingredient
Federal regulators have okayed a new type of flu vaccine with a booster in it, with the hope of better protecting seniors from the virus.

What Does a Baseline Concussion Exam Test For?
With the NFL rolling out new rules on concussions, head injuries in sports have received a lot of attention in the media recently.

Painful Chikungunya Virus Can be Worse Than Feared, Study Shows
Chikungunya, a painful, mosquito-borne virus that's spreading fast across the Americas, can be more serious than feared, researchers report.

Autistic Brothers Excel in Southern University Marching Band
Brothers Josiah and Micah Frank, both of whom have Autism, are key members of the powerhouse Southern Univ. Marching Band, "The Human Jukebox."

Farm Recalls Produce Used in Costco Salad Linked to E. Coli
19 people in 7 states have been sickened. The FDA said Taylor Farms Pacific of Tracy, Calif., recalled a mix of celery and onion used in the salad.

Channel: Medscape Hematology-Oncology Headlines
Stakeholders to Scope Out Value in GI Cancer TherapyStakeholders to Scope Out Value in GI Cancer Therapy
Dr John Marshall previews the upcoming 2015 Ruesch Symposium, in which policy makers, insurers, regulators, researchers, and patients debate about what therapies are worth pursuing in GI cancer.
Medscape Oncology
Elotuzumab (Empliciti) Approved for Multiple Myeloma in USElotuzumab (Empliciti) Approved for Multiple Myeloma in US
A second monoclonal antibody for use in the treatment of multiple myeloma has been approved by the FDA within 2 weeks of approval of the first such product.
FDA Approvals
Radiological Society of North America (RSNA) 2015 Annual MeetingRadiological Society of North America (RSNA) 2015 Annual Meeting
Read clinically focused news coverage of key developments from RSNA 2015.
Medscape Radiology
Practical Advice for Developing a Genetic Testing Program Practical Advice for Developing a Genetic Testing Program
Experts in genetic testing in oncology discuss potential pitfalls when developing a clinical genetic testing program.
Medscape Oncology
How Helpful Is Oncotype DX in Breast Cancer?How Helpful Is Oncotype DX in Breast Cancer?
Dr Lidia Schapira reports on the TAILORx results, in which Oncotype DX identified women at low risk for recurrence, but she says the data cannot be extrapolated to patients at higher risk.
Medscape Oncology
Many Women With Breast Cancer Can't Afford Their DrugsMany Women With Breast Cancer Can't Afford Their Drugs
Hormonal therapy saves lives of women with breast cancer, yet many low-income women, especially if they lack prescription drug coverage, are unable to afford it.
Medscape Medical News
Novel Platelet RNA Test Finds Cancer In Single Drop of BloodNovel Platelet RNA Test Finds Cancer In Single Drop of Blood
A platelet RNA test using just one drop of blood could one day diagnose specific tumor types and help guide treatment by the detection of mutant biomarkers, say European scientists.
Medscape Medical News
Elocta Approved in Europe for Hemophilia AElocta Approved in Europe for Hemophilia A
The European Commission has approved Elocta for the treatment of hemophilia A in all 28 European Union member states, Iceland, Liechtenstein, and Norway.
International Approvals
New Tools to Improve End-of-Life Care DecisionsNew Tools to Improve End-of-Life Care Decisions
At the Palliative Care in Oncology Symposium, researchers presented a number of straightforward new tools to improve patients' understanding of end-of-life care.
Medscape Oncology
Long-term T Does Not Up Risk for High-grade Prostate CancerLong-term T Does Not Up Risk for High-grade Prostate Cancer
The use of testosterone replacement therapy for up to 5 years is not associated with a subsequent increased risk of being diagnosed with high-grade prostate cancer.
Medscape Medical News


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