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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
Myeloma Academy Roadshows
2016 dates anoununced.
AML predictor is uncovered
Acute myeloid leukemia (AML) develops in "clear compartmentalized steps", according to new Canadian research.
Hopeful outlook for leukemia mortality
Europe is enjoying a reduction in leukemia mortality rates across all ages, according to a new analysis.
Roadmap for hematology research revealed
Hematologists from across Europe have for the first time developed a roadmap to help inform research into blood and blood-forming organs.
2016 John Goldman Fellowships For Future Science: Applications Invited
Closing date for applications: 29 February 2016
Project to find new hemophilia therapy begins
Researchers are hoping to develop a gene therapy for hemophilia A with the backing of millions of Euros in investments.
Blood test to detect leukemia presence after adult treatment
A simple blood test has been developed that can detect trace levels of leukemia cells after intensive chemotherapy, it has been announced.
Science behind the wiggle of red blood cells revealed
A team of international biophysicists has demonstrated for the first time how red blood cells "wiggle".
Anaplastic large cell lymphoma causes uncovered
Researchers have pin-pointed the causes of anaplastic large cell lymphoma in a joint project between Austrian and UK teams, it has been announced.
Childhood leukemia forged 'by different evolutionary forces'
Leukemia risk early in life may be dictated more by chance than by the typical "survival of the fittest" that characterizes leukemia formation in older adults, new US research has revealed.
Channel: NBC News Health
USOC Denies It Advised Athletes to Skip 2016 Olympics
The U.S. Olympic Committee strongly denied a report that it advised athletes and staff to consider skipping the Summer Olympics because of Zika.

Zika-Suspected Brain Defects Puzzle Doctors
Some of the birth defects being linked to Zika are especially severe, experts say.

Chipotle Closes During Lunch for Food Safety Meeting
If you planned to grab a quick burrito at Chipotle on your lunch break today, you're out of luck.The Mexican fast food chain will be closed until 3 p.

New Lyme Disease Bacteria Found in Midwest
Scientists have discovered a new species of bacteria that can cause Lyme disease.This one is named Borrelia mayonii.

How Does Zika Spread? 6 Things You Need to Know
Brazilian authorities have advised pregnant partygoers at Carnival, the riotous celebration that has come to symbolize Brazil, not to kiss strangers,

Obama Seeks $1.8 Billion for Zika Response
The money would go for mosquito control, training programs and laboratory capacity to test for the virus, the White House said in a statement.

Meet One Woman Who Drank Before She Knew She Was Pregnant
Endless glasses of crisp, delicious champagne were pouring down my throat and I wasn't even tipsy and I certainly wasn't feeling sick.

CDC Urges Travelers to Use Condoms to Avoid Zika
Men who have traveled to Zika-affected zones should use a condom if they want to be absolutely sure they don't infect sex partners, federal healt

Gene 'Signature' Could Lead to Early Cancer Test
The change in genetic function common to 5 types of cancer might lead to a blood test that could detect cancer earlier.

Brazil Sprays for Mosquitoes As Zika Fears Threaten Carnival
Health department workers are spending the week spraying up and down the streets of Brazil's major cities, trying to kill Zika-carrying mosquitoes.

Channel: Medscape Hematology-Oncology Headlines
Defibrotide's Promise in Rare but Fatal Syndrome Post HSCTDefibrotide's Promise in Rare but Fatal Syndrome Post HSCT
Phase 3 data from a trial that used historical controls to assess safety and efficacy of defibrotide show that it confers survival benefits in patients with VOD and multiorgan failure after HSCT.
Medscape Medical News
Side Effects With Sorafenib More Pronounced in Thyroid CancerSide Effects With Sorafenib More Pronounced in Thyroid Cancer
The incidence of side effects from the oral multikinase inhibitor sorafenib appears to be considerably higher among patients with differentiated thyroid cancer than those with renal cell or hepatocellular carcinoma.
Medscape Medical News
CRC Builds Up STEAM in Midst of Blizzard CRC Builds Up STEAM in Midst of Blizzard
After digging out from a blizzard, Dr John Marshall discusses highlights from GICS 2016, including molecular testing, new drugs, and key studies results, plus the STEAM trial in colorectal cancer.
Medscape Oncology
FDA Expands Use of Single-Use Antiemetic FosaprepitantFDA Expands Use of Single-Use Antiemetic Fosaprepitant
The FDA has approved single-dose fosaprepitant dimeglumine to prevent delayed nausea and vomiting in patients who receive moderately emetogenic chemotherapy.
FDA Approvals
Pharmacogenetic Testing for 5-FU Saves Lives and Money Pharmacogenetic Testing for 5-FU Saves Lives and Money
Prospective screening for a genetic variant of DPD, an enzyme that catabolizes 5-FU, reduces mortality from 10% to 0% in patients with this variant and is cost-effective. Dr David Kerr is all for it.
Medscape Oncology
Does Pharma 'Highjack' FDA Public Comment on Cancer Drugs?Does Pharma 'Highjack' FDA Public Comment on Cancer Drugs?
Meetings of the US Food and Drug Administration (FDA) Oncologic Drugs Advisory Committee include public comment. But who are the people commenting?
Medscape Medical News
PD-1 Inhibitors Show Promise in Upper GI CancersPD-1 Inhibitors Show Promise in Upper GI Cancers
Early findings suggest that immunotherapies, such as PD-1 inhibitors, could play a large role in the management of upper GI cancers, as reported by Dr Brandon Smaglo from GISC 2016.
Ruesch Center
Scientists Watch as Healthy Cells Turn Into MelanomaScientists Watch as Healthy Cells Turn Into Melanoma
Harvard researchers have engineered zebrafish to track melanoma as it begins with its initiation from neural crest progenitor-like cells. Can these observations help stop cancer before it even begins?
Medscape Medical News
Proton Beam in Medulloblastoma: 'New Benchmark'Proton Beam in Medulloblastoma: 'New Benchmark'
In children with medulloblastoma, proton-beam therapy has survival rates similar to standard radiotherapy, but fewer systemic toxicities.
Medscape Medical News
Immunotherapy Is ASCO's Advance of the YearImmunotherapy Is ASCO's Advance of the Year
The organization's annual report highlights clinical cancer advances that have been made in the past year, and says immunotherapy 'clearly stands out from the rest.'
Medscape Medical News


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