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RareQoL is a Social Enterprise based in north Wales, with a mission to improve Quality of Life for our communities.
We are a passionate and diverse group of Advocates, supporting the Rare Disease Community and
Under-represented groups
About Us
Our principles
Practice and Values
Our practice is based on the core values of Community Psychology.
This includes respect for equality and diversity, empowerment, participation, supporting communities through social justice and understanding.
All communities want a good Quality of Life, our mission is to help communities o achieve this by working in partnership, promoting engagement and collaboration.
Our Diverse Community
We have an Equality and Diversity Policy which has been written following the guidance set out in The Equality Act (2010). This guides our in our practice when supporting our community.
The Equality Act states that we cannot discriminate against people who share protected characteristics.
We support Rare Disease Community and Under-represented groups. Our aim is to improve Quality of Life for all the communities we serve.
Our practice is based on 3 main areas of work
Community based research
Community based research
Community based research
We are involved in Quality of Life research with health and social care organisations
Well-being
Community based research
Community based research
We promote wellbeing activities to enable our communities to improve their quality of life.
Rare Community Network
Community based research
Rare Community Network
Bringing community groups together for shared learning and project collaborations.
rareqol news: 2020
DECEMBER: RareQoL podcast for 2021
October: new Rareqol partnership with FTWW
November: Find a cure rare showcase
The RareQoL team are delighted that
Dr Shanali Perera, former Rheumatology Doctor and Sondra have joined forces to develop Podcasts to raise awareness about the psycho-social needs of Rare Disease Communities.
The first Podcast will air on 28th February 2021 in to promote Rare Disease Day.
November: Find a cure rare showcase
October: new Rareqol partnership with FTWW
November: Find a cure rare showcase
Sondra had the pleasure of facilitating a round table discussion about social prescribing and the Rare Disease Community.
the session was part of the Rare Disease Showcase run by the charity Find a Cure.
October: new Rareqol partnership with FTWW
October: new Rareqol partnership with FTWW
October: new Rareqol partnership with FTWW
RareQoL have partnered with Fair Treatment of the Women of Wales. We will be sharing knowledge and resources to raise awareness about rare diseases in Wales.
September: research with m4rd
september: PROFESSOR MEENA UPADHYAYA OBE
October: new Rareqol partnership with FTWW
The RareQoL team are delighted that our Founder has been invited to join the MEDICS 4 RARE DISEASES team as a research consultant to assist with the analysis of their Red Flags Project.
The results are due February 2021 in time for Rare Disease Day.
September: RareQoL featured in Good News CYMRU
september: PROFESSOR MEENA UPADHYAYA OBE
september: PROFESSOR MEENA UPADHYAYA OBE
RareQoL were featured in Good News Cymru.
The article gave details of the support the RareQoL had received from Social Business Wales to set up our social Enterprise.
september: PROFESSOR MEENA UPADHYAYA OBE
september: PROFESSOR MEENA UPADHYAYA OBE
september: PROFESSOR MEENA UPADHYAYA OBE
Professor Meena Upadhyaya OBE is mentoring Sondra Butterworth on the
WALES ROUTES TO PUBLIC LIFE MENTORING SCHEME.
On the All Wales BAME Mentoring Scheme, with support of Professor Meena Upadhyaya OBE hopes to continue to raise awareness about rare diseases in Wales.
Our Supporters and Advisors
Rare Community Network
Read our latest Blog about the PATIENT VOICE.