Hello, all -
 
Yesterday, International Rare Disease Day 2009, the European Organization for
Rare Diseases (EURORDIS) launched "The Voice of 12,000 Patients."  This book
presents an analysis of data collected through surveys on the experience and
expectations of patients regarding access to diagnosis and health services. 
 
I attach the downloaded EB chapter pdf.  To download the entire book
electronically, or to see other-language versions, go to:
http://www.eurordis.org/article.php3?id_article=1960
 
I hope you find this helpful.  I would appreciate it if someone could please
post this email on other groups where I am not a participant (EB Friends, EB
Zone), as those members of our EB community may also find the information
useful.  Thanks!
 
DEBRA Canada and the Walk a Mile in My Shoes campaign were partners in Rare
Disease Day 2009 - for information on how you can be involved in 2010, check
out www.rarediseaseday.org and
http://www.rarediseases.org/rare_disease_day/rare_disease_day_info.
 
Best regards,
Gena Brumitt Gruschovnik
(NOTE: International Rare Disease Day is recognized on Feb. 29th - a rare day
itself - and in years when there is no Feb. 29th, it is recognized on Feb.
28th.) 

Vice Treasurer, Executive Committee, DEBRA International -
www.debra-international.org





Director of Awareness & Education, DEBRA Canada - www.debracanada.org
Founder, Walk a Mile in My Shoes campaign for National EB Awareness Week -
www.ebrelay.org
Acting President, Nokee Kwe Occupational Skill Development Inc. -
www.nokeekwe.ca

Co-Chair, Democrats Abroad Canada, London Chapter -
www.democratsabroad.org/group/canada
We must be the change we wish to see in the world.  ~ Mahatma Gandhi

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