How can I support RareQoL?
There are several ways to support us! You can donate, partner with us on projects, volunteer your time, or spread the word about our mission. Every bit of support helps us build stronger networks and create a lasting impact.
Join us today to make a difference and be part of an inclusive, supportive community dedicated to improving the lives of those affected by rare diseases.
RareQoL was Founded in 2020.
RareQoL is a not-for-profit organisation committed to improving the quality of life for individuals, and families, from diverse and ethnic minority groups and communities affected by rare diseases. Through community engagement, research, and advocacy, we work to promote equality, diversity, and inclusion in healthcare and social services.
Dr Sondra Butterworth is the founder of RareQoL and our Projects. Sondra has a PhD in Health and Social Care and is a Community Psychologist, registered with the British Psychological Society. Sondra has a teaching background and is an experienced facilitator mentor and coach. Sondra recently received the Global CEO Excellence Award for best DEI Founder.
We have a small but talented and hardworking team. We are also receiving excellent Pro bono support from members of our community network.
Can organizations partner with RareQoL?
Absolutely! We actively collaborate with academic institutions, healthcare providers, charities, and social care organizations. Partnership with RareQoL offers a unique opportunity to advance inclusive research and support minority communities in the rare disease space.
What does RareQoL do to promote Equality, Diversity, and Inclusion (EDI)?
EDI is at the core of everything we do. From developing the Equality, Diversity, and Inclusive Research Association (EDIRA) to providing training on inclusive research practices, we are dedicated to ensuring that marginalised voices are included in healthcare and research.
We also provide tailored support to underrepresented communities through initiatives like the Minority Ethnic Leadership Development (MELD) program.
We receive no core funding. We gain funding from consultancy and sponsorship. If you would like to support us. Our EDIRA-24 Building Trust symposium was sponsored by NIHR BioResource, LifeArc, Takeda and Astellas. If you would like to sponsor our work, please get in touch.
Building community networks is the cornerstone of our work. Our mission is to develop Communities of Practice to advance inclusive research and practice.
Who can join RareQoL’s Community Networks?
We are happy to informally engage with anyone or any organisations who have a shared mission. This includes patients, caregivers, advocates, healthcare professionals, researchers, and organisations.
How do I get involved with RCNet?
Getting involved is simple! You can join RCNet by signing up on our website. Once registered, you’ll gain access to forums, events, support groups, and opportunities to contribute to our advocacy and research efforts.
We are developing networks with different communities, to grow our impact and advance inclusive research and practice. This includes a network for our Rare Disease patient groups and advocates. We have recently launched our EDIRA Partners.
What are the benefits of joining RareQoL’s networks?
By joining RareQoL’s networks, you’ll have access to a supportive community, expert-led discussions, educational resources, and advocacy opportunities. Plus, you’ll be part of a powerful movement pushing for better policies and services for people with rare conditions.
We deliver training and development workshops both in person and online. New for 2024 will be eLearning microlearning units which can be combined with a coaching or mentoring program. check out our Learning Page for details.
Yes, we do. We are outcome-focused and have provided consultancy services which include: service evaluations, research: critical friend, research design, focus groups, surveys, and research reports.
Every year we organise a national EDIRA conference. EDIRA: to promote inclusive research and practice within our communities. Our EDIRA-25 event had a theme of ‘Barriers to Inclusion’. Our EDIRA-24 event was a ‘Building Trust Symposium’ held at the University of Birmingham. Details of our EDIRA-25 event will be announced soon.