EU Parliament Launches Public Consultation on Rare Diseases

On 28 February 2025, in recognition of Rare Disease Day, the European Parliament’s Committee on Public Health (SANT) launched an online public consultation to gather insights and perspectives on rare diseases.

This initiative aims to deepen the understanding of the unique challenges faced by individuals living with rare diseases and those working in the field, providing a crucial foundation for future legislative efforts.

The consultation is open to all interested parties for a period of one month. Citizens, patient organisations, healthcare professionals, industry representatives, NGOs, and other stakeholders are invited to anonymously share their experiences, challenges, and expectations concerning rare diseases. The feedback collected will inform the SANT Committee’s ongoing work, particularly in shaping policies that address the needs of the rare disease community more effectively.

To share your perspectives and contribute to shaping EU policies and funding strategies for rare diseases, click this link to complete the survey. Your voice matters!

The consultation is available in multiple languages:

• On a computer: You can select your preferred language from the right-hand side of the screen, where a list of language options is available.
• On a mobile device: Tap the three lines at the top right corner to open a dropdown menu, and you can choose your language from there.

Impact on ERNs Financing
The outcome of this consultation is also expected to play a significant role in shaping the future financing of the European Reference Networks (ERNs). As ERNs are instrumental in providing expert care and improving outcomes for patients with rare and complex diseases, adequate funding is essential to support their continued work and expansion. The insights gathered will help the European Parliament assess the financial needs of ERNs more accurately, ensuring that these networks receive appropriate resources to fulfil their mission.

This move aligns with the European Parliament’s longstanding commitment to advancing research and treatment options for rare diseases. In a 2021 resolution on the EU’s pharmaceutical strategy, Parliament underscored the urgent need to focus on unmet medical needs. Additionally, a 2020 resolution called for an EU action plan for rare and neglected diseases, highlighting the necessity of comprehensive strategies post-pandemic.

The newly formed SANT Committee is now at the forefront of these efforts, steering the reform of pharmaceutical legislation and other upcoming initiatives aimed at improving care and support for rare disease patients across Europe.

VASCERN encourages all stakeholders, including patients, carers, and healthcare professionals, to participate in the consultation. Your input can significantly influence future policies and the financing of ERNs, helping to build a more inclusive and supportive healthcare system for individuals affected by rare vascular diseases.