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EB Chapter of new book

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  • Gena
    Hello, all -   Yesterday, International Rare Disease Day 2009, the European Organization for Rare Diseases (EURORDIS) launched  The Voice of 12,000
    Message 1 of 1 , Mar 1, 2009
      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

      [Non-text portions of this message have been removed]
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