RareQoL is a nonprofit 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 through building networks, rare disease research and consultancy.
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.
We have an Equality Diversity and Inclusion 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.
Humie has had 30 years experience of working in the public and voluntary sector, Humie is award-winning Equality, Diversity and Inclusion practitioner specialising in managing projects requiring high-level stakeholder engagement. Humie has an MBA in Project Management and BA Hons in Community Education. Former roles include Operational Manager for the Cardiff Communities First Programme and National Diversity Co-ordinator for the mental health anti-stigma campaign, Time to Change Wales.
Humie’s former advisory roles include the Arts Council Wales, Creative and Cultural Skills and the Black, Asian and minority ethnic (BAME) Covid-19 Socio-economic Advisory Sub-group. Established by the Welsh First Minister Mark Drakeford, the group produced the seminal report in 2020 identifying the socioeconomic factors influencing the adverse Covid-19 health and social care outcomes for individuals from minority ethnic backgrounds.
Humie is Co-Chair of the Learning Disability Ministerial Advisory Group (LDMAG) and. Bringing together parents, carers, health and social care practitioners, the group advises the Welsh Government on improving the lives of people with learning disabilities. As a working carer, Humie contributes to research and policies to improve services and outcomes for individuals with learning disabilities from ethnic minority backgrounds
Humie is employed with National Training Federation for Wales (NTfW) as the Work-Based Learning (WBL) Strategic Equality and Diversity Lead. Humie works with work-based learning providers and the Welsh Government to develop strategies to increase the participation of underrepresented groups onto apprenticeships, particularly disabled people and individuals from Black, Asian and minority ethnic backgrounds. Humie is in the 2018 Western Mail list of top 100 brilliant African Caribbean and African Welsh people who have helped shape Wales. In 2019 she received an Ethnic Welsh Women’s Association Award (EMWWAA) for Social and Humanitarian work. In their 2021 publication ‘Seventy Years of Struggle and Achievement’, she features as one of the inspiring stories from ethnic minority women in Wales. .
To find out more about our #whoseVOICE campaign sign up here.
We are involved in Quality of Life research with health and social care organisations
We promote wellbeing activities to enable our communities to improve their quality of life.
Bringing community groups together for shared learning and project collaborations.
Sign up to hear from us about our activites.
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.
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.
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.
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.
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.
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.
Capel Hermon Business Centre Llandrillo Corwen United Kingdom LL21 0ST.
09:00 – 17:00
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GENERAL DATA PROTECTION REGULATIONS
RareQoL Ltd is compliant with GDPR (General Data Protection Regulations). GDPR
Your privacy is important to us, consequently, we will not share your data with any third party organisations.
RareQoL Ltd aim to ensure that all information we provide is as accurate and up-to date as possible. The information contained on this website is generic in nature, and we do not offer specific advice via this means.
We do not provide medical, legal, social care, educational or specific financial advice. The information we provide is for guidance only.
Please see the professional responsible for your care and support , a health or social services representative, or your GP if you have specific needs which require attention.
The RareQoL Team
Company 12679015 Number
Registered in England and Wales.
Unit 1 Edison Court Ellice Way,
Wrexham Technology Park,
Wrexham, Wales, LL13 7YT
RareQoL is a registered trademark.