Welcome to RareQoL.

At RareQoL, we are dedicated to improving the quality of life for individuals, families, and communities affected by rare diseases and long-term health challenges.

As a leading social enterprise in the UK, we work tirelessly to create a more inclusive, supportive, and equitable future for the communities we serve.

Our mission is rooted in empowering diverse communities, bridging gaps in care, and advancing the principles of Equality, Diversity, and Inclusion (EDI).

RareQoL is your trusted partner in creating impactful change through advocacy, education, research, and collaboration with healthcare providers, charities, academic institutions, and the pharmaceutical industry.

Welcome to RareQoL

CommunityNetworks

We work with different communities, health and social care professionals.

EDIRA Academy

eLearning and Coaching Circles

45 RCNet Members

Advocates and Third Sector Organizations

25 EDIRA Partners

Experts: Lived experience and Practice

MELD

Minority Ethnic Leadership Development
Our Projects and Activities

Check out the range of activities and projects we are involved in!

EDI Training for Boards

We provide tailored training solutions can meet your board’s needs. Together, let’s make equity, diversity, and inclusion central to your organization’s success.

Coaching Circles

We are formalising our learning networks into Coaching Circles. Whether for personal development or organizational progress, coaching circles exemplify the power of collaboration and shared learning.

Inclusive Research and Practice

We have been involved inclusive mixed methods research. By involving diverse voices, particularly those with lived experience, we ensure that health and social care services meet the real needs of all communities.

Diverse Communities of Practice

We work with patient advocacy groups and practitioners from health, social care, academia and pharmaceutical industry. We believe that diverse communities of practice are the cornerstone of driving meaningful change in health and social care.

COCO: COLLABORATION OUTREACH CO-CREATION OUTCOME-FOCUSED

Let's COCO: A Sunset Seminar: Celebrating The 'Doers'.

Let's COCO is the them of our of our EDIRA-25 Sunset Seminar, which takes place on 7th November 2025 at Edgbaston Park Hotel, the University of Birmingham Campus. We are inviting people to come together as a community to inspire, innovate, and empower. The theme of our EDIRA-25 Sunset Seminar is 'Let's COCO': Celebrating the Doers. We are inviting people to us to come together as a community to showcase their achievements in health equity and inclusive research and practice.

We would love to hear from you.

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RareQoL: Connect with us.

If you have any questions, or if you would like to support our work, please do get in touch.

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Dr Sondra Butterworth

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