Just ahead of Rare Disease Day, the International Rare Diseases Research Consortium (IRDiRC) Task Force on Stigma and Rare Diseases convened a pivotal two-day workshop in Paris to tackle one of the most persistent challenges facing people living with rare diseases: stigma.
Stigma contributes to inequality, marginalization, and reduced access to care — with profound consequences for quality of life. The workshop brought together patients, researchers, clinicians, and innovators to advance shared understanding and identify actionable solutions.
Key focus areas included:
- Exploring the unique dimensions of stigma in rare diseases
- Learning from other fields such as HIV, cancer, and birth defects
- Identifying technological and human-centered approaches to reduce stigma
- Proposing a Delphi process to develop a consensus statement on addressing stigma in rare diseases
Stigma Workshop members on site and online, 26 February, 2026 (Paris, France).
Learn more: https://irdirc.org/stigma-and-rare-diseases-task-force/