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Mobilising policymakers

CEO and other policymakers discussing

EURORDIS is committed to engaging with policymakers at all levels of government, and through its various initiatives, it seeks to raise awareness about the needs of people living with rare diseases.

In 2019, EURORDIS created the Network of Parliamentary Advocates for Rare Diseases, which engages with Members of the European Parliament (MEPs) and national lawmakers to become champions for the rare disease community.

The Network of Parliamentary Advocates for Rare Diseases is an informal group of European and national members of parliament advocating for the improvement of the lives of people living with rare diseases. Through the network, EURORDIS aims to bring together members of parliament to ensure strong international and local action, shape political input for current and future legislation, and integrate rare diseases into all relevant policies at all levels.

In 2021, EURORDIS launched Brussels Rare Disease Week, a week-long series of events aimed at engaging rare disease patient advocates and empowering them with the knowledge and skills needed to effectively participate in advocacy activities at the European level. The week includes a series of preparatory webinars, training sessions, meetings with policymakers, and networking events. The goal of this initiative is to raise awareness of rare diseases and present a united message and policy asks to Members of the European Parliament and other policymakers in Brussels on behalf of the rare disease community.

Additionally, EURORDIS organises the biennial European Conference on Rare Diseases & Orphan Products, which serves as a platform to advocate for the needs of the rare disease community to policymakers, regulators, and companies. This conference has become an essential event on the rare disease community’s calendar and a vital opportunity for many policymakers to engage with rare disease stakeholders.

In the past, we were also active partners in the two Joint Actions on Rare Diseases and the EU Joint Action on rare cancers, political initiatives that were essential to shape rare disease policymaking and participated in efforts initiated at the European level to bring into place national rare disease plans for 28 countries. EURORDIS continues to support the creation of similar platforms, where all stakeholders in the rare disease community (patients, clinicians, researchers, public authorities, industry, etc.) can collectively advance policy with an impact on their lives and work.

Through these initiatives and others, EURORDIS is working to ensure that the rare disease community’s voice is heard and that their needs are taken into account in policy and decision-making.