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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
Leukemia cell gene discovery
New findings on the behavior of acute lymphoblastic leukemia cells may help improve treatment for this condition and similar diseases, researchers say.
Protein linked to some cancers
A proliferation of a specific protein has been linked to the cause of some cancers, including leukemia and breast cancer, it has been revealed.
Contraceptive could treat cancer
A contraceptive drug and a cholesterol drug together could provide a powerful, non-toxic treatment for a range of cancers, researchers have revealed.
Anti-hemophilia drug safe for children
Children with hemophilia A can take a long-lasting drug safely and without side effects, a new US study has found.
Pediatric heart surgery patients need whole blood
Fresh whole blood should be readily available for pediatric patients because it reduces the risk of transfusion-related illness, according to a new US study.
Exercise may protect against non-Hodgkin lymphoma
New findings suggest that intense physical activity over the lifetime may help protect against developing non-Hodgkin lymphoma, researchers report.
Heart disease risk for Hodgkin treatments
Patients treated for Hodgkin lymphoma face a massively increased risk of developing heart disease, according to a new study.
Immune boost to destroy HIV
A new approach to curing HIV is being investigated by researchers at Oxford University, UK.
New therapy stops high-risk viruses
A new therapy has helped to prevent three of the most difficult post-transplant viruses that occur in cord blood transplant patients in the USA, researchers say.
Epigenetics crucial in cancer therapy
New insights have emerged from genetic studies into the reasons why chemotherapy and other treatments can be ineffective for cancer patients.
Channel: NBC News Health
Is Arthritis Just for Old People? (No)
Dr. Ernest Patti breaks down why arthritis isn't just an ailment for the elderly.

Doubts on Pre-Natal Gene Test Saved One Child's Life
Stacie and Lincoln Chapman warn of a tragic decision they nearly made based on a blood test of their unborn baby's DNA that turned out to be wrong.

53 People in 9 States Sickened After Eating Raw Tuna
The source of the outbreak is unknown, but most who fell ill reported eating sushi containing raw tuna.

Don't Hold Your Breath: CDC Reports on Pool Accidents
It's called "dangerous underwater breath-holding behavior" and it can kill even highly trained swimmers, health officials report.

Mind-Controlled Robot Arm Gives New Freedom to Paralyzed Man
A man paralyzed from the neck down can drink on his own using a mind-controlled robot arm.

Depression Raises Parkinson's Risk, Study Confirms
A new study strengthens evidence that depression may raise the risk of Parkinson's disease.

CT Scan Shows Nail in Man's Eye
3D medical scan video provided by The New England Journal of Medicine details how a nail pierced through patient's eye.

Depression Raises Parkinson's Risk, Study Confirms
A new study strengthens evidence that depression may raise the risk of Parkinson's disease.

Peter Pan Maker Pays $11 Million Over Food Poisoning
ConAgra Foods has agreed to pay $11.2 million for shipping salmonella-contaminated Peter Pan peanut butter.

New Rabies Strain Found in New Mexico
A new strain of rabies has been discovered in southern New Mexico.

Channel: Medscape Hematology-Oncology Headlines
Green Light for Cancer Immunotherapies in Europe Green Light for Cancer Immunotherapies in Europe
The EU authorities have recommended for approval pembrolizumab for melanoma, nivolumab for lung cancer, and dinutuximab for neuroblastoma.
News Alerts
Over-the-Counter Tx Proves Top Shelf in CRCOver-the-Counter Tx Proves Top Shelf in CRC
Dr David Kerr's top picks for the colorectal cancer presentations at ASCO 2015 surprisingly include two studies on vitamin D supplements and aspirin for patients diagnosed with colorectal cancer.
Medscape Oncology
Early-Phase Research Comes to Fruition in Lung CancerEarly-Phase Research Comes to Fruition in Lung Cancer
ASCO 2015 will feature a number of clinical trials confirming early results for immune checkpoint inhibitors, targeted therapies, and a second-generation cisplatin analogue, according to Dr Mark Kris.
Medscape Oncology
SHAVE a Big Plus in Breast CancerSHAVE a Big Plus in Breast Cancer
Dr Kathy Miller makes her top picks of breast cancer studies to watch at ASCO, noting trials in ER-positive and HER2-positive disease--and a small surgical study that may yield big benefits.
Medscape Oncology
What to Expect in Hematologic MalignanciesWhat to Expect in Hematologic Malignancies
Dr Bruce Cheson previews the most important trials being presented at ASCO 2015 on Hodgkin's and non-Hodgkin's lymphoma, acute and chronic leukemia, and multiple myeloma.
Medscape Oncology
Gynecologic Cancers: New Regimens, Predictive BiomarkersGynecologic Cancers: New Regimens, Predictive Biomarkers
Dr Maurie Markman highlights a number of provocative trials assessing new treatment approaches to gynecologic cancer that will be presented at the 2015 ASCO annual meeting.
Medscape Oncology
ASCO 2015 Raises the Question of ValueASCO 2015 Raises the Question of Value
Dr John Marshall puts his vacation on hold to highlight the themes of ASCO 2015, including the critical question: What is value in cancer care, and how much is riding on the correct answer?
Medscape Oncology
ASCO Unveils New Model for Oncology PaymentsASCO Unveils New Model for Oncology Payments
The new Patient Centered Oncology Payment model would restructure payment for oncologists, improve the quality of care, and reduce cost for patients and payers.
Medscape Medical News
What's Hot at ASCO 2015?What's Hot at ASCO 2015?
This year's meeting focusses on 'transforming data into learning' to speed up the process of applying results from clinical trials into patient care.
Medscape Medical News
Chipping Away at the Secrets of Cancer MetastasisChipping Away at the Secrets of Cancer Metastasis
A novel microchip that can detect clusters of circulating tumor cells offers hope of earlier detection of aggressive, metastatic cancers.
Medscape Medical News


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