AGSD-UK’s 2026-2029 strategy is again based on GSD community priorities.
Three main themes emerged from our community survey and the feedback you provided, which together with an underpinning theme, form the framework for the new strategy.
Themes and Goals
Building awareness
Your responses highlighted the challenges of living with a rare condition that few people understand. Feedback pointed to a need for greater awareness of GSD among the public, health and social care professionals and decision makers. It also flagged the difficulties people can face talking to friends family and loved ones about the condition and the way it affects them. The need for more awareness of the support AGSD-UK can offer was also highlighted.
We aim to address this by working through mainstream and social media to raise the profile of GSD and the support we offer. We’ll seek to create more opportunities for community members to reach and influence professionals and decision makers and will equip people affected with tools and strategies for talking to others about the condition.
Supporting wellbeing
Your feedback stressed the central importance of wellbeing support. This included areas such as access to appropriate aids and adaptations that could enhance quality of life, as well as a need for specific tailored support around diet and exercise. Respondents were keen for more online and video resources, along with more opportunities to connect with others affected.
We’re therefore planning more evidence-based print and video resources to help people live well with the condition, including those with the rarest GSDs, plus provision of online exercise and nutrition programmes. We’ll continue our work to connect people through our programme of local, national and online get-togethers.
Collaborating for change
The need for progress towards better management, treatments and gene therapies remained an urgent priority. Community members wanted more information about research and how to get involved and underlined the importance of international collaboration in such a rare condition.
Our plans include extending our international reach and partnerships to help pool data and resources on behalf of the community. We will also continue to work with professionals and other partners to ensure management based on best available evidence, putting the community at the heart of clinical practice and research developments.
Getting fit for the future
Analysis of the current context and areas for AGSD-UK to build on, gave rise to a final underpinning theme of making sure AGSD-UK is fit for the future.
We will ensure regular renewal of our trustee and volunteer teams to bring appropriate new skills and perspectives. We will also strengthen the way we support our volunteers, providing relevant training and recognition of all they contribute.
Planned activities to achieve our goals
BUILDING AWARENESS
People affected will know about the support available, and encounter greater understanding from the public, professionals and decision-makers.
Activities to achieve goal
- Work to secure AGSD-UK advisor presence in every specialist centre.
- Plan and deliver sustained social media campaigns to increase public understanding.
- Provide training for community representatives to act as spokespeople for the condition.
- Use relevant policy and professional meetings as a platform for people affected to shaire their experiences.
- Develop a manifesto for GSDs and engage the community in promoting this.
- Use Rare Disease Day as a hook for case studies in print and broadcast media.
- Equip people with tools and support to talk about the condition to their family, friends, employers and the wider public.
- Identify a patron who is well positioned to promote the cause.
- Promote our updated website through search engine optimisation.
Outcome measures
- >20% uplift in support available from AGSD-UK among community members with outreach service/named contact available in every specialist clinic setting.
- >20% uplift in proportion of community members who feel comfortable talking about their condition.
- >25% uplift in social media engagement and opportunities used to raise awareness.
SUPPORTING WELLBEING
Everyone living with any GSD will have access to comprehensive support services and wellbeing programmes that are tailored to their needs.
Activities to achieve goal
- Offer all-round advocacy and support to anybody affected by GSD.
- Strengthen our information provision for those with the rarest GSDs.
- Host regular living well socials plus online groups for under-served sections of the community.
- Provide tailored online exercise programmes and nutrition clubs, along with our annual walking programmes.
- Develop new evidence-based print and video resources to help people live well with the condition.
- Increase the reach and impact of our community magazine in helping people to live well.
- Connect community members through our national events and in-person get-togethers in different parts of the UK.
Outcome measures
- >80% of people engaging with our events and groups report positive impact on living well.
- >80% of people engaging with our support services report positive impact on living well.
- >20% increase in reach among targeted underserved communities.
COLLABORATING FOR CHANGE
Community members will benefit from research, treatments and service developments that are shaped by their input and driven through effective partnerships.
Activities to achieve goal
- Work with partners to establish a cross-sector, multi-disciplinary GSD hub to share knowledge, facilitate collaboration and speed progress to better management and treatments.
- Host regular professionals’ meetings and education sessions, developing up-to-date information to meet the needs of this audience.
- Extend our international reach and partnerships to help pool data and resources on behalf of the community.
- Consider design partnerships to explore possibilities for better tailored aids and adaptations.
- Gather and deploy evidence to support the development and approval of new treatments and management strategies.
- Promote research awareness and participation among people affected and ensure priorities and studies are shaped by their experiences.
Outcome measures
- >20% increase in community members who feel well informed about research and developments in the field of GSDs.
- >20% increase in reach and engagement of multi-disciplinary specialist team members.
- -multi-disciplinary GSD hub in place to share knowledge, facilitate collaboration and speed progress to better management.
Underpinning goal:
GETTING FIT FOR THE FUTURE
Our strong engaged community and financial stability will equip us for future challenges.
Activities to achieve goal
- Work to develop long-term relationships with funding bodies and cultivate new industry partners.
- Run sustained legacy giving and community funding campaigns.
- Ensure our volunteers and fundraisers get the support and recognition they deserve.
- Future proof our board and volunteer team through regular renewal, bringing a range of skills and perspectives.
- Equip our volunteer and staff teams with relevant training to maximise their effectiveness and enhance transferable skills.
Outcome measures
- Board representation provides full range of relevant skills and perspectives.
- >80% of volunteers and fundraisers say they feel valued and supported.
- Income continues to grow to meet community needs.
All GSDs pulling together makes us all stronger.