11th European Conference on Rare Diseases & Orphan Products (ECRD 2022): Putting rare diseases policy into action

10 June 2022 – The conference is organised by EURORDIS and will take place online from 27 June to 1 July 2022. The main topics are Good health and well-being, Reduced inequalities and Industry, innovation & infrastructure.

The European Conference on Rare Diseases & Orphan Products (ECRD) is a patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place.

ECRD 2022 will take place online on 27 June -1 July.

The Conference is an opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, healthcare industry representatives, academics, payers, regulators and Member State representatives. This 11th edition follows a pivotal two-year Rare 2030 Foresight Study, supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030. The concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. This ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.

The three main topics of the conference are:

1. Ensuring healthy lives and promoting well-being for all people living with a rare
2. Reduce inequality within and among countries by focusing on equity for people living
with a rare disease
3. Building resilient infrastructure, promoting inclusive and sustainable industry and
forstering innovation for people living with a rare disease

More information about the programme and registration is available here.