Skip to main content
MetabERN - Education

Share information and documentation with actors involved in the field of hereditary metabolic disorders

Home > News > Let’s make a pact to ensure patients’ sustainable access to rare disease (...)

Let’s make a pact to ensure patients’ sustainable access to rare disease therapies

3rdMulti-Stakeholder Symposium, 13-14 February 2019


Let’s make a pact to ensure patients’ sustainable access to rare disease therapies 3rdMulti-Stakeholder Symposium, 13-14 February 2019 Crowne Plaza Brussels

Rationale & ObjectivesEURORDIS-Rare Diseases Europeis organising the 3rdMulti-Stakeholder Symposium in February 2019 to buildon the outcomes of the previous multi-stakeholder Symposiaheld in2016and 2017. We will usethe collaborative multi-stakeholder approachin the position paper‘Breaking the Access Deadlock to Leave No-one Behind’writtenin January 2018 to developand garner broad endorsement for a ‘roadmap’ document detailinga joint vision, offering solutionsandstatingcommitments byall players in the rare diseasecommunity aimed at accelerating thedevelopment of effectivetherapies and guaranteeingtimelyand universalaccess to them, thereby progressively reducing existing gaps and inequalities. The timingofthis initiative is of the upmost importanceas theEuropean Parliament elections will take place in May 2019 and the related changes in the European institutions, in particular at the European Commission,will subsequently take place. The ongoing discussion around the establishment of the Multiannual Financial Framework for the period 2021 –2027 providesadditional opportunities. Thus, it is essentialfor the rare disease community to have a clear and shared‘roadmap’ that bothhighlightsthe critical need for a European vision and offers practical solutionsthat are implementable by the current and future European parliamentarians by2025. Link