The annual ELA Spain family gathering

From September 5 to 8, 2024, the National Reference Center for the Care of People with Rare Diseases and their Families (CREER) in Burgos hosted the ELA Spain Family Gathering. New and old families got together in a warm atmosphere.

The days were rich in activities designed to encourage creativity and well-being, such as assisted therapy workshops with animals and music. Families strengthened their bonds by sharing their experiences, notably during a presentation on MLD that highlighted the importance of newborn screening. They also took part in a nursing workshop, learning essential skills such as cardiopulmonary resuscitation. The big surprise was the MABU workshop, which combined psychology and art. Through this activity, families explored emotional management while discovering and developing their artistic gifts, resulting in a transformative and creative experience.

The panel of experts shared their knowledge of new therapies and treatments. Individualized consultations were offered to meet the specific needs of each family. The presentation of innovative technologies, such as the FESIA device and Ottobock’s Exopulse Mollii suit, generated great interest in how these tools can improve patients’ mobility and quality of life.

While the adults attended lectures and consultations, the little ones enjoyed an unforgettable experience, enjoying a magic show and games, rounding off the day with moments of joy and entertainment.

This gathering was a journey of learning, connection and empowerment. The experiences shared and knowledge gained strengthened our community, reminding us that together we are stronger.