Founder
Dr Sondra Butterworth
Sondra is the Founder of RareQoL. She is a community psychologist, educator, mixed methods researcher, mentor, and coach. Sondra brings expertise in inclusive research, leadership development, and diversity training.
Book an informal chat to explore collaboration or consultancy with Sondra.
We collaborate with our Rare Community Network, Sondra pictured here with RCNet member Alan Thomas CEO of Ataxia and Me.
We collaborate with academics, healthcare and pharmaceutical and public sector organisations to deliver consultancy, training, and coaching services. For students, we offer volunteer opportunities and mentorship
Our Heritage
Strong family and community network.
Our heritage is rooted in the lived experience of a rare disease family navigating long-term health conditions and the realities of health inequality. Drawing strength from both family and our wider communities, we understand first hand the barriers faced by those living with rare diseases. This foundation of resilience, support, and shared experience has shaped Sondra’s commitment to advancing health equity, diversity, and inclusion for all.
Our RareQoL Team is amplified by expert project management from Rose Francis and the expert experience of our EDI Consultant, Humie Webbe, an advocate for equality, diversity, and inclusion in health and social care. Our dedicated Board Members—Tom Butterworth, AJ Pingram, and Joy Pingram—bring valuable insight, governance, and lived experience to our mission. We are proud to include Glenn Webbe as our Ambassador
Successful Collaborations
We are fortunate to have the support of Associate Professor Dr Andrew Mitchell from the University of Chester.
Andrew is the Co-Chair of EDIRA
In the early days of RareQoL we were fortunate enough to be involved in two key consultancy projects with Genetic Alliance UK and Medics 4 Rare Diseases (M4RD) to analyse their “Red Flags” rare diseases research.
Building Trust
Inclusive Research
At RareQoL, we begin by championing health equity for communities affected by rare diseases. As a not-for-profit social enterprise, we are led by Dr. Sondra Butterworth, whose vision drives our commitment to equality, diversity, and inclusion.
Please keep in touch
Through innovative research, advocacy, and education, we empower individuals and organizations alike. Ultimately, our inclusive networks and collaborative initiatives ensure that everyone’s voice is heard and valued on the journey toward better quality of life.