Our People

Our Trustees

RareQoL Trustees
RareQoL Trustees and Ambassador

RareQoL Project Team

Dr Sondra Butterworth is the Founder of RareQoL and the projects associate with our work including

RCNet: Rare Community Network

EDIRA: Equality Diversity and Inclusive Research Association

RareQoL Learning.

To contact Sondra email her on


Humie is our RareQoL EDI Specialist. She has provided workshops for our Rare Community Network. Humie was a speaker at our EDIRA 2023 conference, she was also part of a focus group which RareQoL has been involved in with the Cardiff University Learn Project funded by the Michael J Fox Foundation.

Humie will also an author on our forthcoming EDIRA book.

Rose is our RareQoL Administrator and Project Manager. Her role is vital to the success of RareQoL. Rose has excellent project management skills will is we have come to heavily rely on as RareQoL develops.

We are delighted to be joined by Kimberly Thomas Tague, who will be supporting RareQoL with our marketing and social media strategy.

Kimberly has helped us with her broadcasting skills and produced a number Podcasts to support our EDIRA conference.

Kimberly will be supporting the writing our EDIRA book and supporting the patient advocates section of the publication.

Elizabeth has been with RareQoL since the beginning.

Beth helped to develop our Rare Community Network and was a speaker at our EDIRA conference, Elizabeth is the founder of Rare Advocate Consultancy and will be working with RareQoL on projects to support our underserved and under-represented communities.

Sam Fillingham is the CEO of the Rare Disease Charity PIP UK.

We are delighted that RareQoL and PIP UK have signed a Memorandum of Understanding and have agreed to work in partnership on a number of projects.

Sam was a speaker at our EDIRA conference and Sondra and Sam were interviewed by Kimberly on a podcast to promote our partnership.

Skip to content