The European Parliament’s public health committee kicks off its survey on rare diseases

The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee on Public Health (SANT) in bringing a better understanding and detailed knowledge of the challenges of persons affected by rare diseases and views of persons working with or involved in rare diseases.

The online survey can be filled in by all interested parties and is open for one month. Citizens, but also stakeholders (patient organisations, representatives of industry, NGOs etc.) have the opportunity to provide anonymous input with information about their difficulties, needs and expectations regarding further EU actions in the field of rare diseases.

Parliament has consistently highlighted the need for research into rare diseases and the development of medicines. In a 2021 resolution on the EU’s pharmaceutical strategy, it stressed the importance of advancing research for unmet medical needs.

Previously, in a 2020 resolution, it called for the creation of an EU action plan for rare and neglected diseases as part of a post-pandemic public health strategy. The newly established SANT Committee will now lead Parliament’s work on the issue, including through the reform of the pharmaceutical legislation and upcoming initiatives.