#GoodNewsCymru | Social enterprise

Quality of life for rare disease community key for Wrexham SIC

Sondra Butterworth shares insight into how RareQoL’s serves rare illness other and underrepresented communities, including the development of a ‘COVID Collective’ for practical solutions and guidance about providing safe spaces for vulnerable groups.

By Ben Bostock · 21 August 2020

See this page in: Cymraeg

Where did the idea originate?

I have been working in health, social care and community- based settings for my whole working career. Also, over the last few years I have been working full time and studying for a Health and Social Care PhD in the subject of Quality of Life and Social Support at the University of Chester. As I came to the end of my studies, I became more passionate about making a social change and sharing the new knowledge and skills that I had gained.

Can you give us a summary of what has been achieved?

I belong to a diverse group of advocates who have set up a social enterprise RareQoL Ltd which has a main objective of improving the quality of life for the rare disease community and under-represented groups. We registered with Companies House in June 2020 and launched our web site on the 4th July 2020. Since then we have had almost 1,000 visits to our website and a number of leads and contacts.

We have been very well supported by Rachael Hobbs our Business Advisor from the Social Business Wales and have been able to achieve a great deal since we registered as a company. We have a constitution; an ethical business model, developed key polices and advice made funding applications with Rachael’s assistance.

One new project is the development of a COVID Collective which aims to provide practical solutions and guidance about providing safe spaces for vulnerable groups coming out of lockdown.

Did you have to overcome any major obstacles / challenges, particularly during lockdown?

Setting up a new business during a pandemic did not at first seem like a sensible thing to do, however, as we became more aware of the increased risks to people in the communities we serve, it became a justifiable rationale for moving forward with the development of our social mission.

What’s next?

As a diverse group of advocates and professionals we have been approached to become involved in several different projects. We will be working with charities, support groups and rare advocates.

If you had one message for the social business sector right now, what would it be?

We recognise the importance of social businesses collaborating we would not be able to achieve. One strong message I would give would be to have a clear vision and find like-minded individuals, groups and organisation who share that vision or have a similar work ethic and philosophy.

Don’t be afraid to ask for help, recognise you can’t do it all.


Jonathan is one of the social entrepreneurs who have attended the ‘Start up with a cuppa’ mutual peer support sessions where people from start-up social enterprises in Wales can meet and discuss ideas, best practice and future collaborations with each other. You can sign up for the August mutual support sessions here. See you there!

RareQoL has received business consultancy support and advice from Social Business Wales New Start, funded by the European Regional Development Fund and delivered by the Wales Co-operative Centre.

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