Fellowship Programme

The RDI Fellowship Programme was created to empower patient advocates by offering a platform for networking opportunities, access to information and sharing experiences at international level.


  • To build capacities of patient advocates and organisations
  • To serve as breeding ground for new patient leaders for the rare disease community
  • To support networking, exchange of experience, dissemination of patient advocacy knowledge and best practices
  • To create a sense of community, with commonalities and differences
  • To enable RDI members and other patient advocates who cannot afford to take part in RDI-supported events

The programme covers:

  • Registration fees
  • Travel and Subsistence expenses for the duration of the event
  • Depending on location of event, RDI will grant full 100% Fellowship or partial capped Fellowship (the exact amount or percentage will be announced in the Call for Expressions of Interest)

In general, RDI will reimburse funds based on receipts of actual expenses incurred, within 30 days.

Type of Meetings covered:

The Fellowship Programme is primarily focused on supporting patient engagement in international fora where RDI is active or there is strategic interest on the part of RDI to become active. The Fellowship Programme can also cover capacity building opportunities.


  • Annual RDI Meeting
  • RDI Level-3 Conferences
  • UN-events that are relevant to rare diseases
  • Twinning / mentoring programs (amongst umbrella patient groups)
  • Capacity building workshops or training seminars


Individuals can respond to a Call of Expression of Interest or be appointed by RDI’s Council. In both cases, applicants complete a Fellowship application, describing their profile (patient, parent, volunteer, staff, affiliation(s), country or region, background, experience, language skills and their motivation).

Fellows will be selected based on their advocacy skills and objectives, by an ad-hoc committee made up of RDI Director and one member of RDI Council appointed as the lead for that event.

Mutual Commitment:

Selected patient fellows must be available to attend the entire conference and relevant satellite workshops (if applicable). They will be invited to send RDI a short report after the conference with the take home messages of the event they attended and evaluation of the Fellowship Programme, with suggestions for improvement.

Fellows are encouraged to share their testimonies and analysis of their country’s situation with respect to the theme(s) of the conference (ie. access to information, treatment, care and services, registries, plans and policies).


Support for RDI Fellowships is placed into a common pool of funding to be awarded by RDI. RDI thanks the companies listed here for their support, which makes the RDI Fellowship Programme possible.

For more information on how companies can support the RDI Fellowship Programme, contact Jill Bonjean, Corporate Relations Advisor.