Our Strategy for 2026 – 2030

1. Lack of awareness and information about rare chromosome and gene disorders creates significant stress.
2. Rare chromosome and gene disorders affect every aspect of daily life.
3. Individuals and families feel isolated.
4. Advocacy is not always valued or a choice.

1. Invest in our team to increase our outreach and influencing capacity and develop a strategy to increase the visibility of rare chromosome and gene disorders at a local, national and international level.
2. Develop new information and advocacy resources to empower our members to educate and raise awareness of rare chromosome and gene disorders in their local areas or countries.
3. Work with our international partners in the genomics community to embed understanding of lived experience of rare chromosome and gene disorders in research and clinical settings.
4. Engage with policy makers to ensure rare chromosome and gene disorders are equally represented alongside more well-known conditions such as Down’s syndrome and autism spectrum disorders.
5. Run a targeted education and outreach programme in the UK to increase awareness, diversity, inclusion, understanding and representation of rare chromosome and gene disorders within Unique membership but also throughout health, education and social care. We hope the findings can be employed and rolled out around the world.

• Developing national and international partnerships and collaborations that increase recognition of RCGDs and their impact on families.
• Highlighting the scale and diversity of the rare chromosome and gene disorder community so families are visibly and accurately represented.
• Creating opportunities for families to share lived experiences to build empathy and understanding.

• Engaging parliamentarians, policymakers, and key national bodies and local services to secure equitable attention, investment, and provision for rare chromosome and gene disorder families.
• Increasing the representation of rare chromosome and gene disorders in national strategies, research agendas, and service planning.
• Ensuring lived experience of rare chromosome and gene disorders informs policy discussions and decision making and is embedded in research and clinical settings.

• Facilitating peer connections and broaden our outreach to under-represented and under-served groups in the rare chromosome and gene disorder community.
• Expanding and develop our information offer to ensure as many families as possible have access to guidance that is relevant and appropriate for them.
• Ensuring our services are shaped by the varied needs across the rare chromosome and gene disorder community so they are relevant and responsive.

• Investing in our team to increase our capacity and work more effectively.
• Ensuring strong financial management.
• Delivering effective governance through timely meetings, policy reviews and regulatory compliance.