About us: FAQ

Dr Sondra Butterworth

Welcome to RareQoL’s “Frequently Asked Questions” page – your source for evidence-based information about our organisation and its mission to enhance the quality of life for communities living with rare diseases. As a dedicated community health psychologist and founder of RareQoL, Dr. Sondra Butterworth leads our not-for-profit organization in its unwavering commitment to improving the well-being of diverse backgrounds and families affected by rare diseases.

Dr Sondra Butterworth

At RareQoL, we stand firmly behind our core goals, which guide our every endeavor:

  1. Enhancing Quality of Life: Our primary focus is on enhancing the quality of life for individuals and communities. Through engagement activities, we work tirelessly to provide support, resources, and opportunities that uplift and empower those facing the challenges from inequalities,
  2. Inclusive Research: RareQoL believes in championing research that is inclusive, diverse, and reflective of the communities we serve. By collaborating with academics, health and social care organisations, charities, and professionals, we strive to make both research and practice more encompassing and representative.
  3. Equity and Diversity: Promoting equality, diversity, and inclusion is at the heart of our mission. We have established initiatives like EDIRA (Equality Diversity and Inclusive Research Association) to engage professionals in pharmaceuticals, healthcare, social care, and academia in creating a more equitable landscape, that improves quality of life.

Dr Sondra Butterworth

What does the name RareQoL mean?

Rare Quality of Life.

Who is the Founder of RareQoL

Dr Sondra Butterworth

Why are you called RareQoL

Dr Sondra Butterworth, is a carrier of a Rare Disease and from a Rare Disease family. She worked for many years supporting the Rare Disease Community, trying to improve quality of life.
Sondra felt that the name RareQoL says exactly what we are trying to achieve.

What is Dr Sondra Butterworth’s professional background

Sondra trained as a nurse, then she qualifies as a teacher of young people and adults in further and higher education.

What qualifications does Sondra have?

1. Registered General Nurse (No longer practicing as a nurse)
2. Psychology – BSc. Hons, MSc. also a Graduate member of the British Psychological Society.
3. Post Graduate Certificate in Back Care.
4. Post Graduate Certificate in Education.
5. PhD in Health and Social Care: focusing on quality of life and social support.

Where is RareQoL Based

We are based in north Wales in the UK.

When was RareQoL Founded

On the 4th July 2020.

What does RareQoL do?

Most of our work is related to engagement with different charities, community groups, universities and health and social care organisations.

Can I become a member of RareQoL?

Yes. Membership is FREE for advocates, small charities and students. Simply fill in our membership form which you can find on our homepage

What projects are you involved in?

We have a number of different project which involve different community groups

What is your RCNet project?

Our Rare Community Network is for patients, advocates and small charities from the rare disease community to get together for virtual meeting. We have 4 meetings a year.

What is your EDIRA project?

Equality Diversity and Inclusive Research Association is focused on raising awareness about inclusive practice and research. We had our first conference in May 2023 and our next is planned for June 2024 in Birmingham.

What is your RareQoL Learning project?

We have a new eLearning platform that we are launching later in 2023. We will have free eLearning courses and resources for our members

What is your MELD project?

Minority Ethnic Leadership Development, is anew initiative for 2023. We are working with partners to develop leadership training, coaching and mentoring for future leaders from minority ethnic communities. We aim to provide focused and bespoke training and development sessions for Senior Management Teams Who have the responsibility for implementing the Anti- racist Wales Action Plan.

Can I hire RareQoL to do consultancy?

Yes. We have been involved in many consultancy projects which including, research project, service evaluation, training and focus groups. If you would like to chat about consultancy, please complete the contact-us form on the home page.

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