Rare Disease Month, culminating in Rare Disease Day on February 28 this year, is an important time for the rare disease community to raise awareness and advocate for improved research and care. Rare Disease Day, first launched in 2008, is now observed worldwide to highlight the challenges faced by individuals living with rare conditions and to call for greater support from governments, healthcare providers, and the public. Throughout February, STXBP1 associations across Europe and Israel engaged in impactful activities to spread awareness and raise funds for their initiatives.
Highlights from Across Europe and Israel
Germany: Running for Rare Diseases
The German Association for STXBP1 participated in the Rare Diseases Run 2025, the largest online run for rare diseases in Europe. This inclusive event took place from February 24 to March 2, 2025, and was organized by Elternhilfe Syngap e.V. alongside 33 other associations from Germany, Austria, and Switzerland. Under the motto “Running makes you happy,” participants organized local runs to draw attention to individuals with rare diseases, including STXBP1 syndrome, and to advocate for their recognition as the orphans of medicine.
Spain: A Stadium Spotlight
Fundación Lukiss shared news from Madrid where awareness was raised through two high-profile events. On Rare Disease Day, the Puerta de Las Rozas bridge was illuminated in green, symbolizing solidarity with those affected by rare diseases. Additionally, on March 2, before an official Spanish professional league match between Leganés C.F. and Getafe C.F., a child with STXBP1 syndrome and another with Duchenne syndrome performed the honorary kickoff. This powerful moment, broadcast live on TV and radio, showcased the importance of recognizing children with rare diseases. Both football clubs promoted awareness before and after the game, ensuring widespread visibility.
Israel: A Community Effort for a Cause
The Rare Smile Association in Israel held a cherry tomato sale event, thanks to a generous donation from Seeds Technologies, a seed breeding company that provided an entire greenhouse harvest. Volunteers and students from two local schools helped sell approximately two tons of cherry tomatoes and several hundred kilograms of peppers, with all proceeds supporting the organization’s work.
In addition, the annual baking and cookie sale project, initiated by Neomi, continued its inspiring tradition. Neomi first learned about STXBP1 syndrome at the age of seven when she heard the story of Ran, the son of the organization’s founders. Moved by his journey, she decided to take action. Since second grade, she and her family have organized the sale of approximately 1,000 cookies each Rare Disease Month, preparing dough, enlisting volunteers to bake and package, and selling the cookies to raise funds. Her dedication exemplifies the power of individual initiative in supporting rare disease communities.
A Heartfelt Thank You
These incredible initiatives across Europe and Israel reflect the unwavering dedication of STXBP1 associations and their supporters. Whether through sports, public awareness campaigns, or community-driven fundraising, each effort contributes to a growing movement that ensures individuals with rare diseases receive the recognition and support they deserve. We extend our deepest gratitude to everyone involved for their hard work and passion in making Rare Disease Month 2025 a meaningful success.