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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
Screening works for severe immune disorder
A new study has investigated the usefulness of newborn screening for severe combined immunodeficiency.
Child leukemia deaths down by half
Death rates of children from leukemia have halved in the last ten years, according to an analysis published today.
Low cost test for sickle cell
A new test for sickle cell disease could cost just a few pence a time, researchers revealed last night.
Gene test for lymphoma changes
Norwegian researchers have announced new techniques for predicting when patients with B-cell lymphoma will face a down-turn in the disease.
Adapting patients' own cells against leukemia
A new procedure may help improve outcomes for patients with acute lymphoblastic leukemia.
Scientists grow thymus from stem cells
British scientists have successfully used stem cells to grow a fully functioning organ in a living animal, it has been announced.
DVT therapies have similar outcomes
Two different approaches to treating deep vein thrombosis have similar outcomes, according to a new study.
Medicine cabinet search for cancer drugs
A threadworm drug, an anti-fungal drug and an antacid are among common medicines that might be used to treat cancer, researchers have revealed.
Clotting drug beneficial in orthopedic surgery
The blood clotting drug tranexamic acid helps prevent blood transfusions during orthopedic surgery, according to a new study.
Clot-busting drugs vital after stroke
New findings support the use of clot-busting drugs early on in the treatment of stroke.
Channel: NBC News Health
Double Mastectomy Doesn't Boost Survival: Study
The results raise concerns about a riskier, potentially unnecessary operation that increasing numbers of women with breast cancer are choosing.






EXCLUSIVE: Ebola Survivor Kent Brantly Reveals Near-Death Ordeal
American Ebola survivor Dr. Kent Brantly told NBC News in an exclusive interview that he felt like he was about to die in a hospital in Liberia.






What Slows Down Emergency Responders When Every Second Counts
NBC?s Tom Costello goes to the front lines as the 911 calls come in, the alert tones go off, and the sirens scream to "get out of the way."
Music Lessons May Boost Poor Kids' Brainpower
Music lessons may rev up young brains enough to help close the academic gap between rich and poor, a new study suggests.






3 ways to make your squats less boring
A traditional bodyweight squat involves a shoulder-width stance, arms out in front or hands behind your head, and a simple lowering of yourself towards the ground by bending at the knees and hips.Very good for you but totally boring!These three squat variations take that move to the next level by tweaking the basics.






How Running Changed Life for a Boy with Autism
Mike Brannigan, 17, is a top 10 high school runner being courted by 200 colleges and finding focus in school through the sport.
See the Gross, Funny Reason This Baby is Smiling
Those cute naked newborn photos are trendy, but risky, as one dad discovered the hard way. Caution: Poopy content ahead.






Put Down That Bread! Science Backs Up Low-Carb Diet
A low-carb diet is better for losing weight and may also be better for lowering the risk of heart disease than a low-fat diet, a new study finds.






Another American Doctor Infected With Ebola: Charity
Another American missionary has tested positive for Ebola, the charity group SIM USA said Tuesday.






Man Who Escaped Ebola Center Chased in Liberia
A man who escaped an Ebola quarantine center in the Liberian capital Monrovia fended off vigilantes with rocks and a stick before medics caught him.






Channel: Medscape Hematology-Oncology Headlines
New ASCO Guideline for HER2-negative Advanced Breast CancerNew ASCO Guideline for HER2-negative Advanced Breast Cancer
The American Society of Clinical Oncology (ASCO) has issued a new guideline for the treatment of patients with HER2-negative advanced breast cancer.
Medscape Medical News
Asking the Experts: CAM and CancerAsking the Experts: CAM and Cancer
Two experts on CAM discuss the difference between complementary and alternative treatments, as well as how they relate to mainstream cancer care.
Medscape Oncology
Complementary and Alternative Treatments in CancerComplementary and Alternative Treatments in Cancer
Eight popular complementary interventions in cancer care are assessed on the basis of the scientific literature and what experts in the field say about their safety and effectiveness.
Medscape Oncology
Dramatic Responses in B-cell Cancer With Engineered T-cellsDramatic Responses in B-cell Cancer With Engineered T-cells
T-cells engineered to hone in on CD19 target antigens have once again shown dramatic responses, this time in diffuse large B-cell lymphoma.
Medscape Medical News
Cancer Research UK Working to Improve Info on WikipediaCancer Research UK Working to Improve Info on Wikipedia
The first Wikipedian-in-residence at a medical organization is working at Cancer Research UK to improve the accuracy of information on certain tumor types.
Medscape Medical News
Who Needs Zoledronic Acid in Early Breast Cancer?Who Needs Zoledronic Acid in Early Breast Cancer?
Dr. Lidia Schapira describes the role of adjuvant bisphosphonates in early breast cancer as unclear, but suggests that host factors may prove key to efficacy.
Medscape Oncology
'Fiasco' Over PSA Test Should Never Happen Again'Fiasco' Over PSA Test Should Never Happen Again
It's all about the cost/benefit ratio in screening for prostate cancer, says Dr. Gerald Chodak, although many people continue to misunderstand the real numbers.
Medscape Urology
'Strikingly Effective' Approach for Depression in Cancer Pts'Strikingly Effective' Approach for Depression in Cancer Pts
A new integrated program for treating depression in cancer patients was 'strikingly more effective' than current standard of care.
Medscape Medical News
Majority of Depressed Cancer Patients Not Getting TreatedMajority of Depressed Cancer Patients Not Getting Treated
Three-quarters of depressed cancer patients are not getting treated for symptoms in the United Kingdom.
Medscape Medical News
Chemo Safety: Can Biomarkers Help?Chemo Safety: Can Biomarkers Help?
Dr. David Kerr reports on 'toxgnostics,' the use of genetic markers to identify patients at high risk for adverse side effects from chemotherapy and logically modify doses before treatment
Medscape Oncology

 

 
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