FAQ

Rare Quality of Life

June 2020

Dr Sondra Butterworth. A Community Psychologist, Mixed methods researcher, educator mentor and coach.

We work across the UK

RareQoL helps organisations work with communities in ways that are inclusive, ethical, and effective — especially in rare disease and health equity. We bridge lived experience and professional expertise to improve how research, services, and engagement are designed, delivered, and evaluated.

Yes we have free membership for small charities and advocates.<br />We have a paid membership offer for communities of practice through our EDIRA Academy Network.

Yes we have our annual EDIRA event which has a different theme each year. <br />Year 1: Barriers to Inclusion<br />Year 2: Building Trust<br />Year 3: Celebrating the Doers.

We specialise in inclusive research, patient and community engagement, health equity, and equality, diversity and inclusion (EDI). This includes culturally responsive approaches that support trust-building, accessibility, psychological safety, and meaningful involvement (not tick-box participation).

We work with patient organisations and charities, universities and researchers, health and social care teams, and industry partners (including pharma and life sciences). We are particularly experienced in supporting engagement with rare disease communities and ethnic minority communities who are often under-served in research and services