Rare Disease Day 2024

We marked Rare Disease Day 2024 with a high-profile lighting display and series of awareness activities. The Portsmouth Spinnaker Tower was illuminated in colourful lights to draw attention to rare genetic disorders.

Founder Laura spearheaded a busy day. She attended a Rare Disease Day reception at the Palace of Westminster in London, then participated in the digital launch of a new documentary titled "Life with CASK". Following these London events, she travelled to Portsmouth accompanied by local councillor Charlene Maines to view the illuminated tower in person.

By leveraging symbolic public spaces and media platforms, the foundation aimed to educate the broader population about rare genetic conditions that typically receive limited public awareness — part of broader international Rare Disease Day activities advocating for patients living with uncommon genetic and developmental conditions.