Rare Disease Day 2024!

Today, as we come together to shine a light on rare diseases through Rare Disease Day, I have found myself thinking about Amelie a lot and her battle with Tay-Sachs disease. Her spirit, determination, and infectious smile are all memories that myself and Patrícia hold close to our hear and she continues to inspire us through our work at the Cure & Action for Tay-Sachs (CATS) Foundation.

Amélie’s journey with Tay-Sachs not only showed resilience, it showed real strength. Her life was a testament to the power of love that a rare disease community can have, where its unwavering hope in the face of adversity is something that many people can relate to.

Through Amélie and the countless others impacted by rare diseases, we are reminded of both the progress we’ve made and the challenges that lie ahead. While there have been huge advances in research and advocacy which has brought us closer to understanding and treating these conditions, there is still much work to be done.

Rare Disease Day serves as a powerful reminder that our efforts must extend far beyond a single day of awareness. We should all see it as a call to action to continue the fight for better treatments, support, and ultimately, a cure every single day of the year.

I think it’s important that we carry not only Amélie’s legacy forward, but the entire rare disease community with determination and commitment. I know I don’t need to say it, but they all inspire us to continue working our hardest in our efforts in the pursuit of a future where rare diseases no longer cast a shadow of uncertainty, but instead, are met with understanding, compassion, and unwavering support!