Membership Meetings

RDI Membership Meeting Edinburgh 2016

RDI’s Annual Meeting will be held from 14:30 to 18.30 on May 25th, 2016 – the day before and in the same premises as the European Conference on Rare Diseases & Orphan Products (ECRD 2016) in Edinburgh, Scotland.

The event is open and will be of interest to anyone seeking to engage with the international patient movement, build their capacities and advocate for rare diseases at the international level.

The event is mainly targeted to national, regional or international patient groups.

However it is open to other rare disease stakeholders, such as international networks of academics and clinicians, international research-based organisations, industry and others.

The event will also be the opportunity for RDI members and those patient groups potentially interested in joining, to meet and discuss the advocacy agenda of the global alliance. At the meeting, the results of the elections of the first Council of RDI will be announced and the new members of the Council will introduce themselves and the actions planned.

The event will be preceded by a Closed Meeting for RDI Members only

Agenda

Registration form

RDI Membership Meeting Madrid 2015

The first annual meeting of RDI took place in May 28, 2015 in Madrid, Spain, alongside the EURORDIS Membership Meeting.

Rare Diseases International Membership Meeting Madrid 2015

Over 60 patient representatives from 30 countries gathered for the official launch and inaugural meeting and to adopt the principles of a Joint Declaration aimed at advocating for rare diseases to be an international public health priority.

The Rare Diseases International Pre-formation Group

Yann Le Cam, EURORDIS Chief Executive Officer, said at the launch, “The foundation of RDI is a historic moment, turning the rare disease patient movement into an international one. By coming together we are creating a critical mass that cannot be ignored. Joining together makes each of us stronger locally and together globally.”

He emphasised that globalisation is not a challenge for the rare disease community but part of the solution, commenting, “The complexity of the rare disease community can be united through RDI. Rare diseases are currently ignored on the international agenda. There is a long way to go, but we must look at our diversity as a strength, not a problem.”

Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD) added, “CORD has benefitted tremendously from its EURORDIS membership and RDI will be an even greater resource, especially for patient groups in countries that are just developing rare disease policies, by allowing them to draw upon best practices, support and a global patient voice.”

Peter L. Saltonstall, President and CEO of the US National Organization for Rare Disorders (NORD), said, “NORD is pleased to join Rare Diseases International and to collaborate with leading patient advocacy groups from around the world to help make rare diseases an important global public health priority.”