Publicatiedatum: februari 2023

On 6-9 February 2023, 38 rare disease advocates from across Europe convened in Brussels for Rare Disease Week.

During the week, participants engaged in training and practical efforts to influence policymaking on behalf of the tens of millions of people living with rare diseases across the continent.

After everyone returned to home to their respective countries across, we spoke to two attendees of Rare Disease Week: Lyndsey Walsh, Advocacy Officer at Rare Ireland Family Support Network, and Oriana de Sousa, a rare cancer advocate from Portugal.

Both Lyndsey and Oriana found that attending Rare Disease Week empowered their efforts to advocate for their communities going. They described coming away from the week with a strong sense of being part of a larger, united European community of advocates.

They also shared how the week provided with a deeper understanding about how their personal and their community’s experiences can be drawn upon to effect positive change and start meaningful discussions with those who decide on policy, both at the EU and national level.

Bron: Eurocordis