Welcome to our vibrant online RareQoL® Community, we are so pleased that you are visiting our website This is a collaborative space where caregivers and practitioners passionate about wellbeing, health, social care and research, come together with the purpose of improving the quality of life for the communities we serve. We are a project-based social enterprise focused on key areas of work.
What do we do?
We undertake research and engagement activities to raise awareness about the needs of diverse, raredisease and underserved communites.
RCNet: our Rare Community Network is an online community of 40 rare disease patient advocates, charities. Find out more.
EDIRA: Equality Diversity & Inclusive Research Association, in partnership with the University of Chester Find out more.
M.E.L.D Minority Ethnic Leadership Development. Find out more.
We are a passionate and diverse group of advocates, supporting the rare disease communities and underrepresented groups. We have developed an inclusive and empowering community network where individuals, families, caregivers, and advocates come together to connect, support, and advocate for those underserved communities affected by rare diseases.
We have created a safe space in which we practice equality diversity and inclusion, using the FREDA Principles, also known as the Fairness, Respect, Equality, Dignity, and Autonomy Principles.
This provides a framework for promoting ethical and inclusive practices in research and data collection. These principles are particularly relevant when working with under-represented and under-served communities.
RareQoL learning is a new FREE platform for our members to be launched later this year.
Many of our community with lived experience are often being asked to be involved in focus or advisory groups. We want to offer our members a forum to be able to offered consultancy services.
Keep checking our website for more details.
“Experts in our own experience”.
Dr Sondra Butterworth
We are offering FREE membership to individual patient advocates, small charities and community groups.