Community Psychologist and Founder
Dr Sondra Butterworth
At RareQoL, we transform lives by promoting Equality, Diversity, and Inclusion (EDI) for rare disease and underserved communities. Explore how our team empowers individuals and families through collaboration. Discover our inclusive space where every voice is heard. Keep browsing to learn more and find out how you can make a difference with us!
Who We Are?
RareQoL, a social enterprise, improves the quality of life for communities affected by rare diseases and underrepresented groups. Guided by the FREDA Principles: Fairness, Respect, Equality, Dignity, and Autonomy. We engage with our RareQoL Community to prioritise ethical and inclusive practices across all our work.
EDIRA (Equality, Diversity, and Inclusive Research Association), in partnership with the University of Chester, champions inclusive research that reflects all communities. We ensure underrepresented groups are part of research that impacts their quality of life.
Pictured on the right are speakers and sponsors from our EDIRA-24 Building Trust Symposium.
Dr Kim Daybell: PIP UK Ambassador
John James OBE, Sickle Cell Society
RCNET: RareQoL Community Network
Our RareQoL Community Network (RCNET) brings together a wide range of community groups, including those affected by rare diseases and diverse communities. We offer opportunities for advocacy, knowledge sharing, and collaborative learning.
Humie Webbe MBA RareQoL Consultant is pictured left leading a workshops discussion group. A member of our RCNET Alison Watson CEO from Ring-20 research & Support.
RareQoL Consulting: Practical Solutions, Inclusive Research, and Community-Focused Outcomes
At RareQoL Consulting, we specialize in delivering practical, outcome-focused solutions that drive real impact for organizations, communities, and individuals. We understand the unique challenges faced by underserved and rare disease communities, and we partner with organizations to create inclusive, equitable research and community-based initiatives that lead to meaningful change.
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