photo of RDI members with RDI banner

RDI Members from Across the Globe Gather in Barcelona for Annual Membership Meeting

At the first in-person membership event since the Covid-19 pandemic, RDI members from across the globe gathered in Barcelona on 30 October 2023 to discuss their vision for the future of the rare disease community.

The meeting kicked off with an ice breaker in which members were asked to create a quick sketch of their vision of something they would like to see in the next four to five years. They then presented these sketches to a larger group, organized by region — Asia-Pacific, Africa, the Americas, and Europe — with a fifth group representing global alliances.

While PLWRD face different challenges in these different regions, there were many common themes that emerged: equity, inclusion, access, representation, and universal health coverage. These key points will help to shape and guide the vision and mission of RDI over the coming years.

After a brief coffee/networking break, the members were joined by several partners from RDI’s Alliance of Companies for a panel of patient advocates from around the world, moderated by RDI Council Chair Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD).

The diverse panel included Antoine Gliksohn of the Global Albinism Alliance, Mirjam Mann of ACHSE (Germany), Eda Selabatso of BORDIS (Botswana), Monica Ferrie of GSNV (Australia), Regina Prospero of Instituto Vidas Raras (Brazil) and Jiaying Zheng of the China Alliance for Rare Diseases (CHARD). The panel was followed by a Q & A and group discussion.

The event was a fruitful and constructive way to open RDI’s participation in the World Orphan Drug Congress, with members going on to represent the rare disease patient community in formal panels, presentations and roundtables, as well as informal discussion with representatives from pharmaceutical companies, NGOs and policy-making bodies.

Six panelists on stage

RDI Members Elevate the Voices of PLWRD at the World Orphan Drug Congress in Barcelona, Spain

Forty RDI members from 6 continents attended the World Orphan Drug Congress in Barcelona from 31 October to 2 November, 2023, participating in presentations, panels and roundtables, actively representing their communities and speaking in a common, united voice on behalf of Persons Living with a Rare Disease.

Some key messages from our members:

🔑 The importance of patient empowerment through the full development cycle of treatment¬†
🔑 The importance of patient care pathways to enable access to diagnostics, treatment and care
🔑 The importance for countries to prioritize rare diseases and have a policy framework in place to increase equity and access to diagnosis, treatment and care
🔑 The importance of recognizing that the patient journey goes beyond access to treatment and requires a holistic approach, including social support
🔑 The need to acknowledge the mental health impact resulting from living with a rare disease, including social isolation and stigma

Thank you to our members and partners for elevating the voices of PLWRD on this international stage. We can’t wait to see the next achievements of the global Rare Disease community.