4th RDI Annual Meeting
Delegates from 33 member organisations attended the first part of the meeting, reserved to members only. One third of the member delegates came from outside Europe: from Argentina, Brazil, Colombia, USA, Canada and all the way from India, Iran, China, Japan, Singapore, Hong Kong and South Africa.
The Membership Meeting included an Extraordinary General Assembly called by the Council to approve the legal incorporation of Rare Diseases International (RDI) among other items. Present members unanimously adopted the statutes of the new organisation and approved the Council’s decision to proceed with RDI’s legal incorporation, which will be completed before the end of the year.
The rest of the morning was devoted to the presentation of various programs that merit attention from patient groups working at international level. Of particular interest was the Conference Programme to support national or regional conferences that include an international dimension. Also, the presentation of RDI’s new role in the International Rare Disease Research Consortium (IRDiRC) was discussed. The Membership Meeting was the opportunity for members to hear and provide feedback on tools that could be of use in their advocacy work internationally.
In the afternoon, RDI members were joined by representatives from other patient groups, as well as industry and other stakeholders of the rare disease community, for a two-hour session devoted to tools, means and actions to advocate for rare diseases in the United Nations system.
For more information: https://www.rarediseasesinternational.org/