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The BOOK OF DOERS EVENT
A launch event took place in Birmingham UK in 2025, facilitated by the EDIRA Co-Chairs Dr Sondra Butterworth CEO and Founder of RareQoL and EDIRA, and Associate Professor Dr Andrew Mitchell from the University of Chester.
Connecting
This hybrid event brings together people from research, health, education, and community sectors to recognise and celebrate those making a real difference in equality, diversity, and inclusion—especially for rare disease and marginalised communities.
EDIRA Partners
Our EDIRA PARTNERS have worked with remarkable and innovative individuals and teams who have addressed issues of health equity and inclusion.
They have made a significant impact on the quality of life for diverse and underserved communities accessing health services, and for rare disease patients and families. We want to celebrate and learn from their innovative work.
THE BOOK OF DOERS
The “Book of Doers” is an inspiring collection of real-world stories from patient advocates, researchers, and innovators driving equality, diversity, and inclusion in rare disease communities. Our event will be showcasing lived experiences and practical solutions; it will highlight how collaboration and co-creation foster health equity and positive change across the sector.
Our ‘Book of Doers’ includes case studies from our EDIRA Partners, collaborators, and sponsors.
The presentations will showcase real-world examples of:
- Equality, Diversity, and Inclusion (EDI): Tackling barriers, building trust, and promoting public participation and engagement for all communities.
- Rare Disease Advocacy: Elevating the voices and lived experiences of rare disease patients, and advancing narrative-based, trauma-informed approaches.
- Health Education: Raising awareness of cultural competence and rare disease issues, and supporting inclusive, accessible education for healthcare professionals and the public.
- Inclusive Research: Promoting health literacy, patient-centricity, and diversity in research and clinical trials through innovative, participatory methods.
- Service Innovation and Improvement: Advancing practical solutions, digital health, and co-designed services to improve quality of life and care for all.