Jun
18
2025

Rare Disease Community | Tomasz Grybek

Tomasz Grybek

🗣 Throughout the week leading to Rare Disease Day 2025, we will be sharing insights from diverse voices highlighting key pathways to improving the lives of those affected. ️

Tomasz Grybek, carer, patient advocate, and Member Board of Directors of EURORDIS – a remarkable alliance of over 1,000 rare disease patient organisations from 74 countries – reminds us of the incredible strength and unity within the rare disease community.

News & Updates

You might also be interested in

Enhancing active patient involvement and data models across rare disease research.
20–21 November — A practical ERDERA workshop to connect researchers, clinicians, patients and funders from underrepresented countries to strengthen capacity for inclusive rare disease research.
Presenting new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion, networking and capacity development.
The 2026 Joint Transnational Call will be launched on 10 December, with a free information webinar on 16 December