New Initiatives on the HorizonDenis Costello, EURORDIS

Cambridge Rare Disease Summit – September 14, 2015

Key indicators

• 77 rare disease communities, most recently Stiff Person Syndrome

• 269 volunteer moderators

• 660 rare disease patient group partners

• 60,000 visitors/month

New Logo

New Homepage

New Homepage

• Currently

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• Become a moderator

Discussion Groups

• Currently

#EMM2015Madrid

Discussion Groups

• Currently

#EMM2015Madrid

Discussion Groups

• Specialised Social Services• RD National Plans• Rare Diseases International • Patient engagement in Drug Dev. • Summer School Alumni• Crowdfunding• European Reference Networks + Centres of

Expertise

Featured Discussion Groups

• 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

Language Roadmap