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Debra International
http://www.debra-international.org
International Rare Disease Day 2009, the European Organization for Rare Diseases (EURORDIS) launched "The Voice of 12,000 Patients." This book presents the analysis of data collected through surveys on the experience and expectations of patients regarding access to diagnosis and health services. The book details the methodology, overall results, results by country and by disease, and conclusions.
To download the entire book electronically, or to see other-language versions, go to: http://www.eurordis.org/article.php3?id_article=1960
EB chapter from this book
A book concerning practical advice for EB patients/families
http://www.icongrouponline.com/health/Epidermolysis_Bullosa.html
A lot of subjects concerning EB is covered here; medical information, stories, photos etc. Please note this is a personal homepage
http://ebworld.faithweb.com/
Book Announcement: Sourcebook on epidermolysis bullosa. For more information, please visit:
http://www.icongrouponline.com
Family Village: a global community of disability-related resources (USA)
http://www.familyvillage.wisc.edu
The Epidermolysis Bullosa (“EB”) Action Network is a nonprofit charitable organization committed to accomplishing the following objective: To improve the financial quality and emotional stability of EB families.
http://www.ebanusa.org
WALK A MILE IN MY SHOES
National Epidermolysis bullosa awareness -Relay-Rally
This event was endorsed by the Dystrophic Epidermolysis Bullosa Research Association (DebRA) of America and the Epidermolyis Bullosa Medical Research Foundation (EBMRF).
http://www.ebrelay.org/main.html
Arabic links:
http://www.dermnet-arabia.net/arabic/index.php?fuseaction=0000000004.subpage&secserno=0000000004&dis_id=25&dis_title_id=0000000353
DEBRA International Research Grant Applications
http://www.debra-international.org/index.php?id=57
Nordic Council of Ministers (Nordiska Ministerrådet)
http://www.norden.org/web/sf4-bidrag//sk
Norges Forskningsråd
http://www.forskningsradet.no/utlysninger/soknad/
Stiftelsen for norske helse- og rehabiliteringsorganisasjoner (Norway)
http://www.helseogrehab.no/
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