The following objectives guide the work of the Plataform for Rare Diseases-EURORDIS:
• Increase the visibility and social awareness of people and families who live with a rare disease, promoting specific initiatives with participating institutions.
• Coordinate training activities to empower representatives of rare disease patient associations.
• Promote a training series on rare diseases for healthcare professionals.
• Foment data gathering on patients of rare diseases to promote research and the development of orphan drugs.
• Carry out activities to promote dialogue and exchange of experience among stakeholders.
Since its founding ten years ago, the Platform has worked steadfastly to foment dialogue and advocacy on behalf of the previously-mentioned collectives. For example, in the Catalan context, the team has proposed and followed legislative changes and work commissions to ensure the best possible results in line with established goals. In Europe, EURORDIS, together with the Plataforma in the local context, keeps close tabs on the European and global agendas in relation to disabilities, lending support to promote mobility and right of access to public spaces for patients of rare diseases in cities, particularly with regard to the accessibility of the built environment, public transpaort and citizen services.
As representative of people affected by rare diseases, the Plaform for Rare Diseases–EURORDIS contributes directly to the United Nations Sustainable Development Goal 3 (“SDG 3”) in its aspiration to guarantee healthy lives and promote the well-being of all people, at all ages. The Platform also supports other SDG’s indirectly through its work in support of local, regional and state governments to advance in inclusivity and equal opportunities, for example inclusive education (SDG 4), and decent work (SDG 8). Taken together, this work forms part of a larger collective effort to advance toward the vision of sustainable cities, in line with SDG 11 and the New Urban Agenda.