FAST UK is delighted to share the publication of our Caregiver Survey Report, bringing together the experiences, perspectives and priorities of families affected by Angelman syndrome across the UK.
FAST UK is delighted to share the publication of our Caregiver Survey Report, bringing together the experiences, perspectives and priorities of families affected by Angelman syndrome across the UK.
We would like to extend our sincere thanks to every caregiver who participated in the survey. By sharing your experiences, you have helped create an invaluable resource that provides meaningful insight into the realities of living with Angelman syndrome.
The report explores a range of topics that matter most to families, highlighting key themes, challenges and priorities within our community. It will help inform future research, support discussions with researchers, pharmaceutical companies and the wider Angelman syndrome community, and strengthen advocacy on behalf of families.
This project represents a significant collaborative effort and demonstrates the power of community-led research. The findings will not only support FAST UK’s work but may also help shape future research initiatives and improve understanding of the lived experience of Angelman syndrome.
We are incredibly grateful to our Trustee, Sarah Washbrook and her husband Andy, for the tremendous amount of work that went into developing the report and analysing the data. Their dedication, expertise and commitment have resulted in a resource that will have lasting value for families, researchers and professionals alike.
We invite you to read the report and see how your contributions are helping to build a stronger evidence base for Angelman syndrome.
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We found solace and purpose through FAST. Their relentless pursuit of a cure resonated with us, and we started our fundraising journey with them.