Conference Programme

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

  • To promote international recognition of local/national/ regional conferences
  • To support conferences organised by national/regional groups who can benefit from international exposure to move forward national/regional agendas
  • To support conferences in developing countries to create awareness and advocate for rare disease policies in countries that are emerging in the field
  • To fill a void of non-commercial conferences that have an international dimension
  • To strengthen meaningful patient advocates participation in  commercial conferences
  • To align the multitude of RD and OD Conferences being organized today

3 levels of engagement (in growing order of commitment)

Level 1 – “Conference endorsed by RDI“

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)

Level 2 – “Conference in Partnership with RDI”

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.

Examples :

  • Partner with EURORDIS, Orphanet, DIA on ECRD
  • Partner with NORD on Rare Disease Summit
  • Partner with Terrapinn on World Orphan Drug Congress (Europe, USA, Asia)
  • Partner with IFPMA on Round Table on Access to treatments
  • Partner with APARDO on Asia Pacific Regional Meeting

Level 3 – “Conference co-organised with RDI”

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.

Examples:

  • Partner with NGO Committee for Rare Diseases to organise a High Level Meeting on Rare Disease at the United Nations in New York
  • Partner with ReAct and CORD in Canada for combined conference May 2019 in Toronto
  • Partner with APARDO or ALIBER to enhance the international dimension of a regional conference
  • Partner with a national alliance for rare diseases in a low or middle income country to provide an international dimension leveraging the national efforts

Eligible events

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.

Application and Decision process

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)

Terms of Agreement in case of Support (1-3):

  1. Use of logo
    For all levels conference organisers are asked to use RDI logo on the communication material of the Conference. An RDI specific logo and text will be provided for each level: “Under the patronage of Rare Diseases International” (Level 1), “In partnership with Rare Diseases International” (Level 2), “Co-Organised by Rare Diseases International” (Level 3)
  2. Web communication, Printed material and Program
    Website, digital material, printed material and program can carry the logo stating the patronage. However, such a statement must be clearly separated from any commercial sponsors or corporate references.
    All organisations are requested to put a link to www.rarediseasesinternational.org on the RDI logo on their websites, either on the program or on other pages of their website.
    RDI will include the event in the News &Events section of the website and promote it via its Twitter account. For Level 2 and 3 RDI will also inform all members via email, and additional targeted promotion will be adapted to each event
  3. Right to Amend or Withdraw Patronage
    RDI reserves the right to request that the reference to RDI patronage be amended or withdrawn at any time if member qualification, event eligibility and/or these Terms of Agreement are not respected. Such decision will happen only after fair discussion and diligent search of solutions.