We are a non-for-profit social enterprise based in Wales making an impact and positive change.
We are a small not for profit company.
Our mission is to improve Quality of Life.
We are a passionate and diverse group of Advocates, supporting the Rare Disease Community and
We aim to make a social impact and bring about change. consultancy nonprofit
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.
One of our RareQoL Directors was interviewed by the UK Tuk Tuk Owners Group .
Tom travels around north Wales in his Tuk, taking photographs of the local countryside. Tom talks about his appreciation of this mindful activity which he finds can help reduce stress.
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.
Our very talented RareQoL Partner Jacky Webbe is the founder of Music Connections.
Jacky was invited to host afternoon of songs from the most ever popular sounds of Motown.
Sessions were lively and interactive and included song lyrics, a Motown quiz and pictures of Motown artists.
The session provided much needed respite for carers in Wales.
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.
RareQoL were Proud be asked by our friends at Ataxia and Me to raise awareness about the International Ataxia Awareness Day on September 25th of each year.
It is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease.
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 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.
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