Eurodis News 2013 June 12

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EURORDIS eNews, 12 June 2013
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The Voice of Rare Disease Patients in Europe
Participants move forward on complex issues at the EURORDIS Membership Meeting 2013!
The EURORDIS Membership Meeting 2013 took place in beautiful Dubrovnik, Croatia from 30 May – 1 June, and participants were cordially invited to put on their thinking caps!
Over 200 participants from over 30 countries were in attendance to discuss issues ranging from funding for National Plans for Rare Diseases, off-label use of medicines, newborn screening and genetic testing, strategies and tools for improving patients’ access to orphan medicinal products, registries, European reference networks, centres of expertise, and specialised social services.
Read more
Membership Meeting 2013 workshop
Online Communities For Rare Disease Patients
New resource for RareConnect moderators and patient groups using social media
Compelling videos from the rare disease community on EURORDIS TV
Charlie Bear
This documentary tells the story of Charlie Lewis, a young boy with Smith-Magenis syndrome - a rare developmental disorder 

Patient-driven initiatives and actions to foster rare disease research
New book Rare Diseases: Challenges and Opportunities for Social Entrepreneurs promotes treatment development
Check out the latest international rare disease events
6th International Conference on Children's Bone Health
22-25 June, Rotterdam, Netherlands

International rare disease events

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This publication (or activity) has been funded with support from the European Union's Health Programme. This material only reflects the views of the author, and funders cannot be held responsible for any use which may be made of the information contained herein.
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