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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
Poor prognosis for young black lymphoma patients
Young lymphoma patients from African-American populations are more likely to die than their white and Hispanic peers, a new US study has revealed.
Call to boost trauma hemorrhage transfusion
Very few patients who sustain serious trauma hemorrhage receive optimal blood transfusion therapy in the UK NHS, according to a new analysis.
'Worm' gel may help preserve blood and tissue
A new way of storing biological tissue and blood samples could help transform blood transfusion, researchers say.
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.
Channel: NBC News Health
Living With Microcephaly
Kansas parents describe raising two daughters with microcephaly, a condition once again in the spotlight because of the Zika virus.









Rates of Dementia Might Be Going Down
"Our study offers cautious hope that some cases of dementia might be preventable or at least delayed," researchers wrote in a new report.









Zika Virus Found in Fetus With Severe Birth Defect
The discovery adds more evidence that the virus, spread to humans through mosquitoes, causes the severe birth defect microcephaly.









Zika Likely to Spread 'Very Rapidly', CDC Head Says
If you want to know how quickly the Zika virus will spread, just look at what happened in Puerto Rico with a related virus, chikungunya.









What's Killing Americans? Guns, Cars and Drugs
Guns, vehicle crashes and drug overdoses help explain a big part of why Americans die, on average, so much younger than people in other countries.









Babies With Zika-Linked Birth Defects May Have Eye Trouble
Brazilian babies born with a birth defect blamed on the Zika virus may also often have serious vision problems on top of brain damage, doctors report.









Hawaii's Big Island Declares Emergency Over Dengue
The mayor of Hawaii's Big Island declared an emergency to deal with an outbreak of dengue fever.The bureaucratic move is aimed at fighting mosquitoes.









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.









What Does 50,000 Volts From a Taser Do to Your Brain?
New research finds that stun guns can create short-term cognitive impairment comparable to dementia ? which can lead to unreliable statements to cops.









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









Channel: Medscape Hematology-Oncology Headlines
FDA Places Clinical Hold on Pacritinib for MyelofibrosisFDA Places Clinical Hold on Pacritinib for Myelofibrosis
In a clinical trial of the investigational agent, pacritinib-treated patients have died from intracranial hemorrhage, cardiac failure, and cardiac arrest.
Medscape Medical News
Which Women With DCIS Can Forgo Radiotherapy?Which Women With DCIS Can Forgo Radiotherapy?
A prognostic scoring system identifies patients with DCIS who may have improved survival with radiation after lumpectomy, and suggests that a substantial number of patients may not need radiation.
Medscape Medical News
Linked: Baldness, Risk for Prostate Cancer DeathLinked: Baldness, Risk for Prostate Cancer Death
Male pattern baldness has repeatedly been found to be a risk factor for prostate cancer over the past 15 years. Now, for the first time, baldness has been linked to risk for prostate cancer death.
Medscape Medical News
Comparing First-Line TKI Options for EGFR-Positive NSCLCComparing First-Line TKI Options for EGFR-Positive NSCLC
Are there clinically significant differences among first-line EGFR TKI options for EGFR mutation-positive NSCLC?
Medscape Oncology
Not All Hospices Provide the Same Quality of CareNot All Hospices Provide the Same Quality of Care
Hospice agencies across the United States differ in how they support patients in the final days of life.
Medscape Medical News
Clinical Pathways Need Oncologists in the Driver's SeatClinical Pathways Need Oncologists in the Driver's Seat
Oncology clinical pathways have the potential to improve patient care and cut costs, but they must be driven by oncologists, not payers, according to a new report.
Medscape Medical News
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

 

 
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