Two family members from our community attended the Spokesperson Training (Formación de Portavocías) organised by FEDER and AELMHU. For us, these spaces are an opportunity to learn, share experiences and strengthen families’ voices.
During the day they worked on communication skills that are useful in different contexts, such as meetings with public authorities, conversations with journalists and awareness-raising activities. Communicating in a clear, approachable and rigorous way is important to explain the reality of people and families affected by SLC6A1-related disorders.
A voice built together
Representing families requires listening, preparation and the ability to convey our needs and priorities. Spokesperson training helps us take part in these spaces with greater confidence and consistency, always respecting the diversity of experiences.
At SLC6A1-Spain we continue working to raise awareness of this rare disease, encourage collaboration and strengthen families’ participation. Everything we learn together can help us move towards clearer communication and a more aware society.
We thank FEDER and AELMHU for organising this training and for the meeting space they provided.
