Mission Statement
To support children and families affected by Xia-Gibbs Syndrome through advocacy, connection and care. We are committed to advancing research and building a more inclusive, better-supported future for everyone living with rare and complex conditions.
We imagine a world where no family affected by Xia-Gibbs Syndrome ever feels alone. Access to therapies, specialists and support should be available to all, regardless of diagnosis, location or financial situation.
Our Founding Pillars
Family Support & Connection
Every family affected by Xia-Gibbs Syndrome should feel recognised, supported and understood. We are establishing a compassionate and inclusive community where parents and carers can seek guidance, ask questions and share lived experience without judgement. From the point of diagnosis onwards, we offer emotional support, peer networks, practical resources and family-led insight to help individuals feel less isolated and better equipped to navigate their journey.
Therapeutic Access & Equity
Access to appropriate therapeutic interventions at the right time is critical to a child’s development and wellbeing. However, many families continue to experience delays, geographical disparities and limited information regarding available provision. We are addressing these challenges by funding targeted interventions, signposting trusted providers and assisting families in understanding and accessing the support to which they are entitled. Whether speech and language therapy, occupational therapy, physiotherapy or access to specialist equipment, we advocate for equitable access to services irrespective of diagnosis, location or financial means.
Community & Collaboration
We are committed to building a connected and collaborative network that brings together families, healthcare professionals, therapists, educators, researchers and aligned organisations. By combining lived experience with clinical expertise, we aim to enhance awareness, improve understanding and influence the systems that affect our children. Collaboration underpins all aspects of our work, recognising that sustainable change is achieved through shared knowledge, strategic partnerships and collective action.
Our goals
First Year
Laying the Foundations
Our initial focus is to formally establish the charity, including official registration, governance structures and operational frameworks. We are committed to building a robust support network for families across the UK, while also raising awareness of Xia-Gibbs Syndrome more widely. In parallel, we will begin forming connections with international organisations, clinicians and researchers with expertise in this condition.
3+ Years
Expanding Reach and Collaboration
At this stage, our aim is to establish a broad network of medical professionals with knowledge of Xia-Gibbs Syndrome. Families will have access to trusted clinicians, reliable information and practical resources. We will continue to expand partnerships with hospitals, researchers and international charities to strengthen clinical understanding and improve outcomes for those affected.
5+ Years
Funding Therapy Support
As the charity secures a reliable and sustained stream of donations, we aim to fund therapeutic interventions for families requiring additional support. This will include the introduction of a grant programme to help cover the costs of private therapies, specialist equipment, travel to medical appointments, communication aids and relevant training for parents and carers. We also plan to support family-led events that strengthen connection and shared learning across the community
10+ Years
Creating a Specialist Clinic
Our long-term ambition is to establish a not-for-profit clinic dedicated to supporting children with Xia-Gibbs Syndrome and other complex conditions. The centre will bring together professionals across multiple disciplines, including speech and language therapy, physiotherapy, occupational therapy and psychology. It will provide both NHS and private referral pathways, offering a warm, inclusive environment where families can access coordinated support in one place.
