RareConnect – Next Steps • Governance evolution – New Member and Partners Committee – Partnership Opportunity to co-promote – Rebranding – New language opportunities – Discussion Groups
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Governance Evolution • Changes to status of relationship with NORD regarding RareConnect • New Governance Model based on Rare Disease Day i.e. with National Alliances
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Governance Evolution II Steering Committee
Members and Partners Advisory Committee
Members and Partners Advisory Committee • • • •
7 representatives from NA 2 reps from participating Patient Orgs 2 community moderators 2 discussion group moderators
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EURORDIS Board of Directors
Staff
Members and Partners Committee (MPAC) The MPAC should be instrumental in: (a) providing expert opinion on and input that may be fed into the overall strategy of the programme, (b) providing feedback from user experience from the use of RareConnect
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Members and Partners Committee (MPAC) • Meet once per year by telephone + email exchange • Members have mandate of 1 year (renewable for up to 2 mandate by Steering Committee)
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New Logo
New Homepage
New Homepage
Discussion Groups • Currently
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Discussion Groups Visit: https://www.rareconnect.org/topics (leave your email for notification of launch) Overview • Ask questions of the Rare Disease community on any related topic (disease, social questions, advocacy) • Answer questions • Write blog or tell story #EMM2015Madrid
Discussion Groups • Currently
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Discussion Groups • Currently
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Featured Discussion Groups • • • • • • •
Specialised Social Services RD National Plans Rare Diseases International Patient engagement in Drug Dev. Summer School Alumni + Nancy Hamilton Crowdfunding European Reference Networks + Centres of Expertise + Healthcare Pathways
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Language Roadmap • Currently localised in 5 languages (EN, FR, ES, IT, DE) with 2 pass translation (Google Translate + Human Translation) • 2015: launch of Portuguese (June) and Russian (November) • 2016: Working with EURORDIS National Alliances to translate into more EU languages #EMM2015Madrid
have become known for. So whether you´re just starting out in desktop recording, or you´ve already laid down a few thousand .... 1,400-Watt, 3-Way, All-in-One PA. âI have used the ...... from Alan [Palomo] from Neon Indian, and kept it for closer
Point(s) de contact: Mme le proviseur du lycée français de Madrid ... Le programme prévoit le rassemblement des deux écoles maternelles, actuellement ...
Department of Genetics ... (health/social) Needs of People Living with RD ... Professionals. â Health care. â Social care. â Education. â Career Guidance.
Apr 18, 2015 - completely in their power, and they were very nice to me, sharing their food and ..... much more than others, but being that the general fine art of ...
