MED13L UK & Our Collaborations

The collaboration between MED13L UK and Gene People is crucial for supporting families affected by rare genetic conditions like MED13L syndrome. Gene People provides essential genetic research, resources, and expert counseling, helping families better understand and manage their condition.

This partnership bridges the gap between the scientific community and families, aiming to raise awareness of MED13L syndrome, improve access to genetic testing, and offer the most up-to-date resources. By combining expertise, we strengthen research efforts and provide emotional, practical, and scientific support to families.

We encourage families to visit Gene People’s website at https://genepeople.org.uk/ to access valuable resources and benefit from this collaboration.

 Simons Searchlight is an international research program that collects genetic and health information from individuals with rare genetic conditions, including MED13L syndrome. By gathering data directly from families through surveys, medical records, and optional biological samples, Simons Searchlight helps researchers around the world understand how MED13L affects development, behaviour, and health over time. This research is essential for identifying patterns, improving diagnosis, and guiding future treatments. For families affected by MED13L, getting involved with Simons Searchlight means contributing to a global effort that brings us closer to answers, support, and progress. 

Visit and participate through their website:  Simons Searchlight | Driven by science. United by hope. 

We are proud to collaborate with Unique – Rare Chromosome Disorder Support Group, a UK-based charity offering vital support for families affected by rare genetic conditions. Unique provides expert advice, connects families, and supports research to advance understanding of these disorders.

As part of our ongoing partnership, we are creating a comprehensive MED13L Guide to support families and healthcare professionals in managing MED13L syndrome. This collaboration combines our resources to raise awareness, provide practical support, and connect families to the latest research.

Visit Unique’s website at https://rarechromo.org/ for resources and to join their supportive community.