The RDI Conference Programme overall aim is to foster rare disease conferences, particularly the international ones, everywhere in the world. It was created in response to requests for RDI to participate, support, endorse and/or co-host events around the world.
The specific aims of the RDI Conference Programme
3 levels of engagement (in growing order of commitment)
Patronage of RDI is given on request and implies no other contribution or funding.
RDI gives its patronage by allowing conference organisers to use the RDI logo and by announcing the event on the RDI website. In addition, RDI will actively promote the event amongst its members and through social media. The link to the conference page and report will be archived in RDI’s website for future reference.
Typically, this type of endorsement is reserved to conferences organised by Members, National RD Alliances and occasionally to International Federations for specific RDs (members or not members)
RDI gives its patronage (as described in Level 1) and is also involved in the content of the Conference with RDI representatives in the Programme Committee. In addition, RDI will provide one to three members of RDI or Faculty Experts to speak at the Conference. The travel and accommodation of RDI speaker(s) are covered by host and/or RDI itself.
As part of the partnership, RDI will request that conference organiser grants a registration fee waiver or fee reductions for patient organisations.
RDI’s underlying objective when granting level-2 support is to support RDI partners fulfil their own needs while building capacities on specific topics of need to advance policy formulation on for example, National Plans for Rare Diseases or Registries.
RDI co-organises the Conference and can be part of the Organising Committee and may be involved in event organisations and logistics..
RDI gives its patronage (as described in Level 1) and is also involved in the content of the Conference with RDI representatives in the Programme Committee (as described in Level 2) and in addition, RDI provides typically 3 to 5 speakers with the financial support to cover all or most of their expenses to take part in the Conference.
RDI also provides fellowships for patient advocates to attend the Conference. The fellowships are customized to the specific needs of the conference eg international or regional fellowships.
Level-3 support means that RDI is strongly involved in the content and structure of the Programme, which should include an RDI presentation or session or a satellite meeting organised hosted by RDI.
RDI’s underlying objective when granting level-3 support is to align conference organisers’ objectives with RDI’s overall strategy so to integrate the country or regions into the RDI advocacy activities eg. showcase UN work, advance RDI advocacy topics and positions, discuss national or regional implementation of rare disease international policy elements.
On average, RDI will give this level of strong support to 2 conferences every year with at least one of conferences taking place in a low or middle income country emerging to rare disease policy.
Eligibility is not restricted to members but conferences initiated by patient organisation members of RDI and by members of the RDI Faculty Experts will be given priority.
Priority will be given to event organised, or strongly supported, by RDI Member organisations.
Conference aims and objectives must be coherent with RDI mission and be relevant to rare disease patients and patient organisations.
Applications are informal but must be submitted in writing. The application should clearly state: the title of the event, its nature and objective, the target audience, the planned sources of funding, the planned partners, as well as the date and venue (as soon as it is confirmed)
The Council of RDI approves each Conference request for support and decides the level (1,2,3) of support to grant. The Council reserves the right not to grant its support.
The Council nominates one of its members as the referent lead for each Conference approved. Implementation of these guidelines are delegated to RDI Director and Council referent lead, as is the selection of RDI speakers and fellows (see: Fellowship Programme)