The Alpha-1 Europe Alliance proudly represented our community at Rare Disease Week 2024 (RDW 2024), held from November 18-22 in Brussels. This significant event, organized by EURORDIS-Rare Diseases Europe, served as a vital platform for patient advocates, including Alpha-1 representatives, to engage directly with newly elected Members of the European Parliament (MEPs), European Commission representatives, and members of the European Economic and Social Committee (EESC).
Advocates seized this timely opportunity to ensure rare diseases remained a priority on the EU agenda amidst the reappointments within the European Commission and European Parliament.
Alpha-1 community
Anabela Lemos, representing the Alpha-1 Europe Alliance and the Portuguese patient association -AA1P- Associação Alfa 1 de Portugal-, joined advocates to share patient perspectives and co-develop solutions for the over 30 million Europeans living with rare diseases.
"We are proud to collaborate on the Rare Disease Action Plan for Europe and champion the rights of those living with rare conditions."
Anabela Lemos
The event focused on critical issues facing the rare disease community, including:
- Equity in treatment and care.
- Access to timely diagnosis.
- Financial and mental health support for patients and caregivers.
- Policies such as EU4Health and orphan drug funding.
The event underscored the importance of collective action and ongoing collaboration between stakeholders to address gaps in care and support for individuals with rare conditions. The Alpha-1 Europe Alliance is committed to continuing this essential work and advocating for the rare disease community.