FAQs
Frequently Asked Question
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What does RareQoL stand for?
Rare Quality of Life
When was RareQoL formed?
June 2020
Who is the Founder?
Dr Sondra Butterworth. A Community Psychologist, Mixed methods researcher, educator mentor and coach.
Where is RareQoL based?
Our registered office is in Wrexham north Wales UK.
What does RareQoL Do?
Our main aim is to improve the quality of life for rare disease and ethnic minority communities. Our main networks are: <br />Rare Community Network. (RCNet) which is a network of 45 small charities and advocates mainly from the rare disease community.<br />Equality Diversity and Inclusive Research Association (EDIRA).<br />This is a network of 25 professionals academics and advocates driving forward projects to improve health equity and inclusive research.<br /><br />EDIRA Academy Network.<br />This is an online community of practice for networking and learning about inclusive research.
Do you have members?
Yes we have free membership for small charities and advocates.<br />We have a paid membership offer for communities of practice through our EDIRA Academy Network.
Do you run events?
Yes we have our annual EDIRA event which has a different theme each year. <br />Year 1: Barriers to Inclusion<br />Year 2: Building Trust<br />Year 3: Celebrating the Doers.
Get In Touch
Collaborate With Us
If you have any more questions and would like to get in touch, or would like to collaborate please get in touch.