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Bridging the gaps between health, social and local services to improve care
of people living with rare and complex conditions

EURORDIS – Rare Diseases Europe, France

EURORDIS-Rare Diseases Europe works across borders and diseases to improve the lives of people living with a rare disease.

EURORDIS is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

 

Key contact:

Raquel Castro

Role in project:

Represent people living with a rare disease and coordinate the project’s external and internal communication, insuring the coherence of the project and the link to the rare disease community (WP3):

  • Internal & external communication strategy
  • Communication channels
  • Communication actions/events : European Conference for Rare Diseases; final conference (EU policy makers, general public)
  • Promotion of integration across WPs
  • Promotion of horizontal & vertical integration: ad hoc advisory groups (Ministries, Regions)

Elaborate the state of the art on social care provision for people living with a rare disease (WP4):

  • Selection of MS in coordination with project partners
  • Selection of patients’ sample
  • Identification of patients’ social care needs: focus groups; quantitative survey
  • Analysis of social care models in Member States (Austria, France, Hungary, Luxembourg, Romania, Spain, Sweden, United Kingdom)
  • Identifying improvement areas: crossing patients’ needs with existing care models to identify gaps

Facilitate the creation of the future European Network of Resource Centres for Rare Diseases and the exchange of good practices between social services (WP5).

  • Elaboration of good practices
  • Workshop session on Voluntary European Quality Framework for Social Services
  • Proposal of improved care pathway model, after stakeholders’ consensus building workshop
  • Recommendations to the pilot
  • Network sustainability plan, including funding opportunities

 

EURORDIS’ activities in INNOVCare are co-funded by:

Kindness for Kids FoundationLogo Kindness for Kids, Germany

Founded in 2003, Kindness for Kids is a Munich based independent foundation focused on helping children with rare diseases and their families, at a scientific and social level.