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.
