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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
New blood test better predicts heart-disease risk
Wral.com - Sat Jul 5, 04:11 am GMT
Blood Test May Replace Surgical Biopsies
Nbc11.com - Thu Jul 3, 02:32 pm GMT
Machine Could Let Blood Test Replace Biopsy
Newsnet5.com - Thu Jul 3, 02:31 pm GMT
AspenBio Pharma Commences FDA Clinical Trial for AppyScore(TM) Appendicitis Blood Test
Pharmalicensing.com - Wed Jul 2, 05:01 pm GMT
Blood test plan draws crticism from civil rights group
Kvue.com - Wed Jul 2, 02:51 am GMT
USADA: Conducting blood tests at track, swimming trials
Usatoday.com - Sat Jun 28, 05:18 am GMT
Blood testing to occur at track, swimming trials
Usatoday.com - Sat Jun 28, 03:17 am GMT
Heel prick blood tests DO hurt your baby, says study
Article.wn.com - Tue Jun 24, 09:20 am GMT
Symptom screening, blood test detect ovarian cancer
Nwcn.com - Tue Jun 24, 02:44 am GMT
Blood test for Down syndrome lifts hopes
Article.wn.com - Mon Jun 23, 09:18 am GMT
Channel: BloodMed.com News
Immune find could boost chronic leukemia therapy
A new vaccine approach to treating for chronic myelogenous leukemia (CML) is being investigated by experts at the University of Maryland and Stanford University, California, USA.
Updated thrombosis guidelines released
New advice has been published for dealing with thrombosis in a variety of patient groups.
Alternative drug may cut hip surgery risks
A novel drug approach could reduce the risk of venous thromboembolism (VTE) among hip replacement patients.
PET scan results determine treatment in Hodgkin's lymphoma
Interim PET scans may improve the treatment of Hodgkin's Lymphoma, a major conference has been told.
China, UAE revamp blood donor systems
China and the United Arab Emirates (UAE) have revolutionized their blood donor systems by achieving almost 100 per cent voluntary donations, according to the World Health Organization.
Sickle cell therapy overlooked, finds review
An effective drug for sickle cell anemia is being underused because of misplaced fears over its proper use and possible long-term side-effects, experts have warned.
Hematologists 'ignore' CML testing guidelines
Nearly half of European hematologists are not adhering to European LeukemiaNet recommendations on molecular testing for Chronic Myeloid Leukemia (CML), concludes a survey presented at the 13th European Hematology Association Meeting (Copenhagen, Denmark , June 12-15).
Blood substitute safety results published
An artificial blood manufacturer has announced positive results for one of its products, a hemoglobin-based substitute named HBOC-201 or Hemopure.
Oral anticoagulant gains widespread approval
A new anti-blood clot drug has been approved for use in the Scottish National Health Service, for preventing venous thromboembolism (VTE) in adults who have undergone total hip or knee replacement surgery.
Excellence in hematology recognized
Top hematologists have been recognized at an international conference for their valuable contributions to the field.
Channel: MSNBC.com: Health
Some psych patients wait days in ERs

** FACES BLURRED IN VIDEO PROVIDED BY THE NYCLU ** In this still photo taken from video provided by the New York Civil Liberties Union, Esmin Green lies face down on the floor in the psychiatric ward of the Kings County Hospital in Brooklyn, N.Y., Thursday, June 19, 2008. Green, 49, had been waiting in the emergency room for nearly 24 hours when she toppled from her chair at 5:32 a.m. and lay writhing, face down on the floor. Security guards and a member of the hospital's staff appeared to notice her prone body, but made no visible attempt to see if she needed help. Within an hour she was dead. (AP Photo/New York Civil Liberties Union)When staffers at a Brooklyn hospital spotted a middle-aged woman lying face-down on a waiting room floor last month, it hardly seemed like cause for alarm.


Strike the right balance

Are you eating enough of good-for-you foods? Or could you be overdoing it with some ?healthy? choices? We have the facts on how much you need to reap nutritional rewards.


Road-trip rescue
Off on a road trip? A drive-through doesn?t have to be a diet detour
Is this even legal ? Pro bono sex advice

When does swinging fling outside of legal bounds? And why accepting PayPal payments for kinky sex isn't such a bright idea. Sexploration offers pro bono advice to keep our readers out of jail.


Haywire brain chemical linked to SIDS
Scientists have new evidence that the brain chemical best known for regulating mood also plays a role in the mystifying killer of seemingly healthy babies ? sudden infant death syndrome.
'Pregnant man' gives birth to daughter
Thomas Beatie, the transgendered pregnant man, gave birth June 29 to a girl, People magazine and ABC News are reporting. He and his daughter are doing well, he told People.
On-the-wagon wines
Tasty booze-free vino gives you a heart-health advantage for even fewer calories. We?ll drink to that!
New West Nile strain may worsen epidemic
A new strain of West Nile virus is spreading better and earlier across the United States, and may thrive in hot American summers, researchers said on Thursday.
Beef recall expands to 5.3 million pounds
Nebraska Beef Ltd. is expanding a recall announced earlier this week to include all 5.3 million pounds of meat produced for ground beef between May 16 and June 26.
German woman?s assisted suicide fuels debate

Former state senator for justice presents a video to journalists about the medically assisted suicide of Bettina Schardt in Wuerzburg during a press conference in Hamburg on Monday, June 30, 2008. Roger Kusch of the incorporated society for 'Dr. Roger Kusch Sterbehilfe' ('Dr. Roger Kusch medicide') assisted the suicide of the 79-years-old woman Bettina Schardt in Wuerzburg, Bavaria. (AP Photo/Joerg Sarbach)The release of a video showing a former local politician helping a 79-year-old woman commit suicide has caused outrage in Germany and prompted some states to try to tighten their rules on assisted suicide.
Channel: Medscape Hematology-Oncology Headlines
The Medscape Hematology-Oncology RSS Feed Has Moved
The Medscape Hematology-Oncology RSS feed has moved to a new location. Please update your RSS bookmark to: http://www.medscape.com/cx/rssfeeds/2678.xml

 

  
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