The last day of February is #RareDiseaseDay, a day dedicated to raising awareness for the 300 million people worldwide living with rare diseases and conditions.
One of those people is Will, a student at Pure College, who lives with a rare genetic disorder called Hao-Fountain Syndrome (HAFOUS) which can cause global developmental delay, learning disabilities, speech delays, autism spectrum disorder, and behavioural challenges, impacting every aspect of his life.
For Will and his family, the journey to a diagnosis was long and uncertain: “It was a relief for me and my family, as we’ve been looking for answers for nearly 22 years,” Will says. After struggling to understand what was behind his developmental challenges, getting a diagnosis brought clarity.
Rare diseases like Hao-Fountain Syndrome often go undiagnosed for years because so few people are aware of them: “I wish more doctors knew about it, and then it could be diagnosed quicker” Will shared.
Will’s journey is just one example, but it’s a powerful reminder that sharing these stories is important to spread awareness and further our mission to support individuals with disabilities and help them live fulfilling, independent lives. This #RareDiseaseDay please join us in sharing Will’s story and make a positive impact in the lives of people with rare diseases, learning disabilities, autism, and other complex needs.
