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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
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.
Blood replacement mechanism studied
German researchers have unveiled new discoveries about how hematopoietic stem cells are activated to replace blood.
Infant saved by genetically modified T cells - first treatment
An infant appears to have been cured of advanced leukemia using an experimental treatment with genetically modified T-cells, it has been announced.
Europe steps up search for HIV vaccine
The hunt for an effective HIV vaccine has been stepped up with the launch of a major European-backed research programme, it was announced yesterday.
Channel: NBC News Health
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.

Brother and Sister Battle Rare Blood Disorder
Brady and Charlee Treu have endured chemotherapy, bone marrow transplants and countless months in the hospital. Yet neither child had cancer.

Burglar Who Stole, Sold Brain Tissue Jailed for 4 Years
A man who sold brain tissue to a San Diego resident has admitted stealing the human brain samples and other tissue from a medical museum.

'Divine Moment': Baby Kissed by Pope in Philadelphia Sees Brain Tumor Shrink
Joey Masciantonio vividly remembers the moment his baby daughter Gianna met Pope Francis because it almost never happened.

Frank Gifford Had Trauma-Related Brain Disorder: Family
The NFL legend, who died in August, suffered from chronic traumatic encephalopathy ? which is often associated with concussions.

8-Year-Old Girl Battling One-in-a-Million Breast Cancer
At only 8, Chrissy Turner is one of the youngest patients ever to undergo a mastectomy for an extremely rare type of juvenile breast cancer.

Ex-Lover Says a Pill Kept Her Safe While She Dated Sheen
Charlie Sheen's ex, Amanda Bruce, used a pill to prevent HIV. The CDC says many Americans don't know about although they should.

Why Your Family Really Needs That Puppy
Dogs, which are already shown to reduce rates of allergies and asthma, may provide kids with yet another benefit: reducing anxiety.

Channel: Medscape Hematology-Oncology Headlines
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
New Therapies Needed for Leptomeningeal CarcinomatosisNew Therapies Needed for Leptomeningeal Carcinomatosis
Leptomeningeal carcinomatosis is a highly fatal complication of melanoma and other cancers, and new therapies have failed to improve prognosis.
Medscape Medical News
Necitumumab (Portrazza) Approved for Lung Cancer in USNecitumumab (Portrazza) Approved for Lung Cancer in US
The novel product, a monoclonal antibody against EGFR, is approved for use with chemotherapy in patients with squamous non-small cell lung cancer (NSCLC).
News Alerts
FDA Okays First-line Nivolumab Alone in Melanoma FDA Okays First-line Nivolumab Alone in Melanoma
Nivolumab, already approved as a first-line treatment for advanced melanoma in combination with ipilimumab, is now approved as a monotherapy too.
FDA Approvals
Elderly Cancer Patients: QOL, Polypharmacy, and SurvivorshipElderly Cancer Patients: QOL, Polypharmacy, and Survivorship
At the European Cancer Congress, clinicians discussed the heterogeneity of elderly patients, polypharmacy, and other factors that complicate the treatment of older people with cancer.
Medscape Oncology
Individualized Cancer SurvivorshipIndividualized Cancer Survivorship
Dr Kevin Oeffinger, cochair of the 2016 Cancer Survivorship Symposium, outlines an approach to cancer survivorship that tailors care the individual across the oncology/primary care spectrum.
Medscape Oncology


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