Rare disease research has long driven breakthroughs in more common conditions, reinforcing Europe’s role as a global leader in biotechnology and precision medicine. Investing in this field is not only a moral imperative—it is a strategic move to boost Europe’s competitiveness in the life sciences. This is especially important in the context of the deployment of the Life Science Strategy and on the eve of the adoption of the Biotech Act.
ECRD 2026 will be a pivotal moment for rare disease policy in Europe, taking place five years after Rare2030 and midway to the 2028 WHO Global Plan target. At a time when the European Commission has yet to commit to a formal EU Action Plan, the conference will unite stakeholders to assess progress and reignite momentum.
The event will launch a community-led effort to co-develop an EU Action Plan—or Strategic Framework—for Rare Diseases. This process begins with a “planning for a plan” approach, defining the scope, objectives, structure, and governance model rooted in accountability and cross-sector co-ownership.
ECRD 2026 will gather input through thematic sessions aligned with Rare Disease International’s regional taskforces, ensuring global coherence. The conference will also define concrete actions: the launch of a stakeholder-based Steering Group, a drafting roadmap, and a coordinated timeline leading to the plan’s advancement and formalisation, anchoring European leadership in global rare disease policy development.
Public registration for ECRD 2026 will open in December 2025.
Poster abstract submissions for the ECRD 2026 are now open until 6 March 2026: https://www.rare-diseases.eu/posters/
For more information in the event and programme, please visit: https://www.rare-diseases.eu/programme-2026/
