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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
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.
New AML drug target
Scientists may have a discovered a weakness in the cells that trigger relapse of acute myeloid leukemia.
Gene therapy hope for beta-thalassemia
Scientists may be on the way to discovering a new treatment for beta-thalassemia based on gene therapy, it has been announced.
Journal Impact Factors
Latest figures released end of July 2014
Channel: NBC News Health
Big Box Health Care: Checkup for the Price of a Latte?
Wal-Mart is taking an aggressive tack, with in-store branded clinics offering primary health care at a price competitors may find hard to match.

Student Slips Over Border, Spreads Ebola to Senegal
A student infected with Ebola evaded health surveillance for weeks as he slipped into Senegal, carrying the deadly virus to a fifth African nation.

8-Year-Old Triathlete Refuses to Leave Brother Behind
Sibling love stretches across the finish line as boy swims, bikes and runs with younger brother in tow.
Eat it or beat it? Snacks for kids
1. Which has more fat? 4 cheese pizza bites or 4 chicken nuggets?Answer: The chicken nuggets have 15 grams of fat; 230 calories. Pizza bites almost same calories ? 200 ? but only 5 g fat, or 2/3rds less fat.2. Which crunchy snacks has more calories? 3 cups of "light" butter popcorn or a serving of baked tortilla chips with salsa?Answer:Chips and salsa have 125 calories.

New Ebola Vaccine Shows Promise
A possible Ebola vaccine is fast-tracked for human trials as the epidemic continues to spread in West Africa. NBC's Erika Edwards reports.

ZMapp Saves Sick Monkeys From Ebola, Study Finds
An experimental drug used to treat two sick American missionaries saved a batch of monkeys infected with Ebola virus, even days after they got sick.

Missionaries Exposed to Ebola Released From Quarantine
The missionaries' 21-day health monitoring periods ended at different times depending on when each had last been in contact with Ebola patients.

Baby Announcement Mimics Apple Product Launch
When his son was born, a former Apple employee announced the happy news with a website designed to look just like an Apple product unveiling.

Back-to-School Time Never the Same For Sandy Hook Mom
What used to be a familiar mix of sadness and relief now includes a sense of fear for parents of children who died at Sandy Hook Elementary.

New Gadget or Vacation: Which Makes Us Happier?
Money spent on doing makes us happier than money spent on having, Cornell researchers found.

Channel: Medscape Hematology-Oncology Headlines
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
CRC Death Rates Variable After Colonoscopic Polyp RemovalCRC Death Rates Variable After Colonoscopic Polyp Removal
The risk for death from colorectal cancer (CRC) is higher in patients with high-risk adenomas than in the general population, and lower in patients with low-risk adenomas, new research shows.
Medscape Medical News
Which Cancer Patients Should Have Ovary Cryopreservation?Which Cancer Patients Should Have Ovary Cryopreservation?
The Edinburgh criteria for determining which pediatric cancer patient should be offered ovarian tissue cryopreservation meets its first test.
Medscape Medical News
Hospital Stays Longer for Weekend Leukemia AdmissionsHospital Stays Longer for Weekend Leukemia Admissions
A huge study shows that pediatric leukemia hospital admissions on the weekend are associated with longer stays and higher risks for respiratory failure.
Medscape Medical News
Rinse Eases Symptoms of Oral Mucositis in Cancer PatientsRinse Eases Symptoms of Oral Mucositis in Cancer Patients
The first randomized controlled trial of products for oral mucositis suggests that an oral rinse improves many symptoms of oral mucositis, compared with placebo.
Medscape Medical News
Primordial Animals Show That Cancer Can't Be PreventedPrimordial Animals Show That Cancer Can't Be Prevented
Even the simplest animals have the capacity to form tumors, and the mechanisms giving rise to these primordial tumors mirror those that cause cancer in humans, researchers find.
Medscape Medical News


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