RDI STRATEGIC ENGAGEMENT

The RDI Strategic Engagement Programme supports the empowerment of patient groups to help them drive policy change, engage meaningfully in global collaborations, and contribute to RDI programmes and policy action.

Prader Willi Syndrom - Mexico

PROGRAMME GOALS

  • COMMUNITY LEADERSHIP

    Support emerging rare disease patient advocates and civil society groups.

  • DRIVE ADVOCACY

    Enable patient groups to drive local, national, and regional policy action and advocacy

  • INTERNATIONAL COLLABORATIONS

    Facilitate community participation in international collaborations on advocacy, research, diagnosis, access and care

RDI ENGAGE & CONNECT

RDI Engage & Connect is the online platform which powers the Strategic Engagement Programme.

Visit the platform for resources and toolkits, fellowship opportunities, a calendar of group meetings and regional conferences, and a database of rare disease events worldwide.

LEARNING PATHS

Toolkits and resources are presented on RDI Engage & Connect according to three thematic learning paths:

  • National & Global Policy
  • Global Collaborations
  • Access & Health Equity

FELLOWSHIPS

RDI offers travel and accommodation fellowships to enable patient advocates to attend events worldwide.

RDI currently offers fellowships to members to attend EURORDIS Open Academy and the EUPATI Patient Expert Training Programme.

Through their participation, patient advocates build a network of support, share learnings and knowledge and strengthen the rare disease civil society movement.

REGIONAL CONFERENCES

RDI partners with disease alliances to host regional conferences and events.

Conferences are a platform for patient groups to discuss region-specific topics and coordinate actions that respond to the challenges and opportunities of their region.

Member-Led Discussions

RDI facilitates, Member-led Discussions, which gather between 10 and 15 participants to dive deep into an issue of common interest to patient advocates.

Meetings provide a space to share knowledge and experiences.

We have partnered with our members to host meetings on a range of topics, from advanced therapies to national plans and patient registries.