15/10/2025
This week’s post is about inclusion in education, and why children with CTNNB1 syndrome deserve classrooms where they truly belong. 🏫
Every child deserves a place where they belong - a classroom that nurtures their potential and celebrates their individuality. For children with CTNNB1 syndrome, this is especially true. Since this condition affects each child differently, some can follow lessons with appropriate support, while others require a much more individualized approach and assistance.
Regardless of ability, every child with CTNNB1 𝘀𝗵𝗼𝘂𝗹𝗱 𝗵𝗮𝘃𝗲 𝗮𝗰𝗰𝗲𝘀𝘀 𝘁𝗼 𝗲𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 𝘁𝗵𝗮𝘁 𝗶𝘀 𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲, 𝘀𝘂𝗽𝗽𝗼𝗿𝘁𝗶𝘃𝗲, 𝗮𝗻𝗱 𝗲𝗺𝗽𝗼𝘄𝗲𝗿𝗶𝗻𝗴.
𝗜𝗻𝗰𝗹𝘂𝘀𝗶𝘃𝗲 𝗲𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 𝗶𝘀 𝗮 𝗿𝗶𝗴𝗵𝘁, 𝗻𝗼𝘁 𝗮 𝗽𝗿𝗶𝘃𝗶𝗹𝗲𝗴𝗲.
Since the 1990s, many countries have embraced inclusive education, allowing children with disabilities to learn alongside their peers in mainstream schools. UNESCO defines this as strengthening ordinary schools so they can reach all learners. 𝗧𝗿𝘂𝗲 𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗮𝗱𝗮𝗽𝘁𝗶𝗻𝗴 𝘁𝗵𝗲 𝘀𝗰𝗵𝗼𝗼𝗹 𝘁𝗼 𝘁𝗵𝗲 𝗰𝗵𝗶𝗹𝗱, 𝗻𝗼𝘁 𝘁𝗵𝗲 𝗼𝘁𝗵𝗲𝗿 𝘄𝗮𝘆 𝗮𝗿𝗼𝘂𝗻𝗱. Yet, this principle often remains an ideal.
Across the world, children with rare diseases like CTNNB1 syndrome face very different realities depending on where they live. Some benefit from schools that provide individualized learning plans and teaching assistants. Others attend schools with little to no support, leaving parents to fill the gaps and advocate tirelessly for their child’s needs.
The biggest barrier is that 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲 𝗮𝗻𝗱 𝗲𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 𝗿𝗮𝗿𝗲𝗹𝘆 𝘄𝗼𝗿𝗸 𝘁𝗼𝗴𝗲𝘁𝗵𝗲𝗿. Children with rare conditions need coordinated support that bridges both systems. Unfortunately, healthcare professionals and teachers often lack the training to understand rare diseases, and educational resources are not equally available.
Even in developed countries, 𝗶𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻 𝗼𝗳𝘁𝗲𝗻 𝗱𝗲𝗽𝗲𝗻𝗱𝘀 𝗼𝗻 𝗹𝘂𝗰𝗸 - the right teacher or local policy. Schools without teaching assistants or therapies may struggle to provide fair opportunities for children with disabilities, placing the burden on teachers and families.
When inclusion fails, children risk social isolation, low self-esteem, and lost potential. Families face financial strain, emotional exhaustion, and the constant fight for basic support.
The European Disability Strategy 2010-2020 aimed to promote participation and equal opportunities, but the UN has noted that many students with disabilities in the EU still face barriers to inclusive education. True change requires more than policies - 𝗶𝘁 𝗻𝗲𝗲𝗱𝘀 𝗰𝗼𝗼𝗿𝗱𝗶𝗻𝗮𝘁𝗶𝗼𝗻 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝘀𝗰𝗵𝗼𝗼𝗹𝘀, 𝗵𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲, 𝗮𝗻𝗱 𝘀𝗼𝗰𝗶𝗮𝗹 𝘀𝗲𝗿𝘃𝗶𝗰𝗲𝘀, 𝗮𝗹𝗼𝗻𝗴 𝘄𝗶𝘁𝗵 𝗽𝗿𝗼𝗽𝗲𝗿 𝘁𝗿𝗮𝗶𝗻𝗶𝗻𝗴 𝗮𝗻𝗱 𝗳𝘂𝗻𝗱𝗶𝗻𝗴.
Rare disease organizations, like the CTNNB1 Foundation, are helping drive this change by connecting families, raising awareness, and advocating for inclusive education and care systems.
💭 𝗤𝘂𝗲𝘀𝘁𝗶𝗼𝗻 𝗳𝗼𝗿 𝘆𝗼𝘂: If you could change one thing in the school system to better support children with learning disabilities, what would it be?
📖 𝗦𝗼𝘂𝗿𝗰𝗲𝘀:
https://www.tandfonline.com/doi/abs/10.1080/1034912X.2018.1562159
https://link.springer.com/article/10.1186/s13023-022-02527-y
