Turner syndrome awareness in Ecuador

FEPAST Activities in Collaboration with FERPof

1. Legal Support Agreement and Other Services for Members
The Ecuadorian Federation of Rare Diseases (FERPof), to which the Ecuadorian Foundation for Turner Syndrome Assistance (FEPAST) belongs, has established an agreement to provide legal support and other essential services for the benefit of its members. This agreement strengthens the legal protection and support for individuals and families affected by Turner Syndrome and other rare diseases in Ecuador, helping them access their rights and offering better assistance in overcoming the challenges they face.

2. FEPAST’s Participation in Digital Media
Lilian Alcívar, president of FEPAST, was invited to participate in the digital channel A Tu Salud, where she spoke about Turner Syndrome. In this space, she shared relevant information about this genetic condition, promoting greater understanding and visibility of the needs and challenges faced by individuals with Turner Syndrome.

3. Rare Disease Day Activities
In commemoration of Rare Disease Day, various activities were carried out, focusing on raising awareness and providing support for people with rare conditions:

• Awareness Campaign at PUCE: We organized a sensitization event at the Pontifical Catholic University of Ecuador (PUCE), where key information about rare diseases was shared to create a more inclusive and informed community.

• Rare Diseases International Conference: We participated in a conference organized by Rare Diseases International, providing a platform for knowledge and experience exchange with other international organizations.

• Self-Acceptance and Self-Esteem Workshop: FEPAST organized a workshop dedicated to strengthening self-acceptance and self-esteem for individuals with Turner Syndrome and other rare diseases, helping them develop resilience and emotional well-being tools.

4. FEPAST President’s Presentation on International Women’s Day
Invited by the Ministry of Public Health of Ecuador (MSP), Lilian Alcívar participated in the panel “Challenges in Female Leadership,” held in honor of International Women’s Day. During this event, the president shared her experiences and the challenges of female leadership in the field of rare diseases, highlighting the importance of inclusion and gender equality in this field.

Impact and Future
Thanks to these activities and alliances, FEPAST continues to advance its mission of supporting individuals with Turner Syndrome and other rare diseases in Ecuador. Through collaboration with FERPof and the ongoing commitment of its team, FEPAST is strengthened as an inclusive organization dedicated to improving the quality of life for its members and their families.