The basics a. Mission Statement (unchanged) eurordi s.org

Transcription

1 The basics a. Mission Statement (unchanged) To build a strong pan-european community of patient organisations and people living with rare diseases, To be their voice at the European level And directly or indirectly to fight against the impact of rare diseases on their lives eurordis.org 1

2 EURORDIS in 2020 has consolidated its position as the organization of reference for rare diseases both in EU and in Europe for its legitimate membership base and its credible European patient voice; EURORDIS has created a global patient voice for rare diseases to promote the cause as an international public health challenge and is recognised as an actor in worldwide processes that have an impact on patients living with rare diseases; National Alliances, European Federations, EURORDIS and Rare Diseases International have adopted a structured strategic approach based on Common Goals. 2

3 EURORDIS is combining unity and diversity; EURORDIS has structured its membership base in Community Advisory Boards by rare disease groupings so to enable patient engagement in European Reference Networks, Registries & Data Collection, European Research projects, R&D and Assessment of therapies; EURORDIS Community Advisory Boards per rare disease grouping will empower our members while being inclusive of and supportive to even the rarest diseases; EURORDIS enables acting at national, European, International levels, partnering with all stakeholders, and in all strategic areas of public health, healthcare, research, social, rights, so to have a patient-centric 360 view 3

4 EURORDIS in 2020 is facilitating the effective implementation of European regulations and strategies at European and national levels in more policy areas research, public health, healthcare, social, digital, rights - for the benefit of patients and families; EURORDIS is promoting a better regulatory and policy environment for PLWRDs to access diagnostic, treatments, care, cross-border care ; EURORDIS is producing more patient generated knowledge and promoting patient-centered policy; EURORDIS has developed a foresight vision for the next decade 4

5 EURORDIS in 2020 is empowering its members, its volunteers, patient advocates at large and beyond PLWRDs through enriched and more capacity building reinforcing their autonomy; EURORDIS is enabling PLWRDs to be represented and rare disease patient advocates to be engaged, in a larger number of innovation research & development, assessments, decision-making bodies, scientific opinion-making committees and projects relevant to fulfiling its mission 5

6 EURORDIS in 2020 is developing direct services to PLWRDs, highly valued by them as well as by our members; EURORDIS has developed a strong global social network of online communities of PLWRDs; EURORDIS has developed services to access comprehensive quality information; EURORDIS has developed services to enable access to cross-border healthcare 6

7 EURORDIS in 2020 is raising public awareness & societal support to the cause of rare diseases, mostly through its members; EURORDIS has reached out to PLWRDs in the EU (if not in Europe) and is recognised by them; EURORDIS members and PLWRDs are engaged with EURORDIS in some key advocacy & citizen actions; PLWRDs are increasingly supporting EURORDIS as individual donors. 7

8 EURORDIS in 2020 is more sustainable in terms governance and of human, financial and organisational resources; EURORDIS resources are growing through a diversification of public and private funding; EURORDIS is reinforcing its volunteer base and long term leadership capacities; EURORDIS is consolidating its multi-cultural & multi-skilled staff and establishing a human resource management; EURORDIS is becoming a movement, its organisation is multi-centric, flexible, responsive, webbased; EURORDIS is working through partnerships, alliances and consortiums; EURORDIS is innovating advanced quality governance. 8