RDI Capacity Building

RDI Capacity Building provides persons living with a rare disease (PLWRD), patient advocates and rare disease organisations a platform for learning, knowledge-sharing, networking, sharing experiences, and developing best practice.

Programme Objectives:

  • Build the capacities of patient advocates and their organisations around the world
  • Empower RDI Member Organisations to shape and contribute to RDI initiatives and programmes
  • Encourage meaningful participation of patient advocates in global collaborations and initiatives
  • Support networking of rare disease organisations with each other and other stakeholders
  • Facilitate sharing of knowledge and best practices

RDI ensures that the voice and needs of the community of persons living a rare disease are at the centre of all capacity building activities. The programme priorities issues of common interest to rare disease patient organisations across the globe and topics identified by the membership of RDI.

RDI Member Meetings

Interactive workshops, meetings and webinars on key RDI programme areas and common advocacy messages. Hosted every 4 – 8 weeks, RDI Member Meetings bring our community together to work together, provide feedback and learn about ongoing and upcoming initiatives.

Recent Webinars

  • RDI Meeting on the Global State of the Art Resource, 21 April 2021, 14.30 CET
  • RDI 7th Annual Member Meeting, 26 May 2021

Past RDI Member Meeting

  • Call for RDI Member Feedback – UN Resolution on Addressing the Challenges of PLWRD and thier Families, 14 January 2021
  • RDI Member Webinar – Introduction to WHO CGN4RD, 4 February 2021

RDI Member-Led Workshops

RDI Members may design and host a workshop or meeting to share information, educate or call for collaboration on topics of interest to rare disease patient organisations and PLWRD across the globe. RDI supports event communication, registration, and dissemination of event recordings and materials online. Workshops are completely free and open to all.

Member-Led Workshop Schedule

The Canadian Organization for Rare Disorders (CORD) is hosting a three-part workshop series entitled, “Knowledge-Sharing on Advanced Therapies”.

Workshops offer an introduction to cell and gene therapies, explore the social, ethical and policy implications of genome editing, and examine case studies from the rare disease field.

  • Workshop One – Introduction to Cell and Gene Therapy, 8 March 2021
  • Workshop Two – Therapeutic and Human Heritable Genome Editing, 14 April 2021, 14.00
  • Workshop Three – 2 June 2021, 14.00 (CET)

RDI Conference Support

RDI supports rare disease conferences across the globe and promotes the participation of rare disease patient organisations in key local and international conferences and events.

RDI Conference Support aims to:

  • Support conferences organised by national and regional groups that would benefit from international exposure
  • Support conferences in low and middle income countries
  • Foster non-commercial conferences that have an international dimension
  • Strengthen meaningful patient participation in rare disease conferences and international events

How does it work?

Eligibility is not restricted to RDI members. However, conferences initiated by patient organisation members of RDI will be given priority.

Conference aims and objectives must be coherent with RDI’s mission and be relevant to rare disease patients and patient organisations.

RDI offers three levels of support, shown below:

Level One : Endorsed by RDI

  • Conference organisers may use the RDI logo
  • The conference will appear on the event page of the RDI website
  • RDI will promote the event amongst its members and through social media.
  • The link to the conference page and report may be archived in RDI’s website for future reference
  • RDI’s support implies no other contribution or funding

Level 2 – In Partnership with RDI

  • RDI offers support as described in level 1
  • RDI will identify and invite 1 to 3 speakers to contribute to the event
  • The travel and accommodation of RDI speaker(s) are covered by host and/or RDI
  • As part of the partnership, RDI will request that the conference organiser grants a registration fee waiver or fee reduction for patient organisations.

Level 3 – Co-organised with RDI

  • RDI offers support as described in level 1 and level 2
  • RDI co-organises the conference and can be part of the organising committee
  • RDI is involved in the content and structure of the programme which should include an RDI presentation, session or a satellite meeting organised and hosted by RDI

How does it work?

Contact RDI to request for RDI Conference Support.

RDI Conference Fellowships

RDI offers conference fellowships to enable patient groups with limited means to take part in rare diseases conferences and events to help build their network and capacities.

RDI Conference Fellowships aims to:

  • Help build the capacities of patient representatives and organisations
  • Support networking and exchange of experience, knowledge and best practices
  • Create a sense of community and mutual understanding
  • Enable participation of RDI members in key rare disease events

How does it work?

Subscribe to the RDI Monthly Newsletter to view fellowship opportunities

Contact RDI to inquire about fellowship opportunities or request support for an event you want to attend.

Past Conference Fellowships

For more information on RDI Capacity Building contact, Hlawulani Mkhabela.

RDI Capacity Building corporate donors: