HOPE is an associate partner in the organisation of the 11^th European Conference on Rare Diseases & Orphan Products (ECRD 2022) which was held online from 27 June to 1 July 2022.

The 11th edition of this important conference for the rare disease community was organised by EURORDIS-Rare Diseases Europe, a non-profit alliance of over 950 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

The conference was estimated to gather over 1000 participants: patient advocates, academics, health care professionals, healthcare industry, payers, regulators, Member State representatives and policymakers.

This 11th edition followed a pivotal two-year Rare 2030 Foresight Study,  which had been supported by EU bodies that had 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 was a critical opportunity to discuss 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. Its timing in June 2022 was relevant considering the context of the initiatives put forth by the European Commission to ensure a strong European Health Union and targets within the UN Sustainable Development Goals.

The conference focused on three main topics:

• Good health and well-being
• Reduced inequalities
• Industry, innovation & infrastructure

Event page