blank
blank
Feb
09
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

Open Academy

Open Academy x ERDERA Schools return to Barcelona to strengthen rare disease research participation

From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.
Captura de pantalla 2026-05-15 093018

NIHR Children and Young People Health Research Centre (NIHR HRC-PCH)

Children, Young People and Family Involvement and Engagement Strategy 2024-2029
joelfazhari-doctor-6989582_1920

Public Involvement in Research Impact Toolkit (PIRIT)

Public involvement positively shapes research. By sharing their time and personal experiences with researchers, members of the public can influence what research takes place, how it’s carried out, and how the results are shared.
stefan_schranz-crutches-538883_1920

The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored.

ERDERA's

search form