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Tag: awareness

  • Training to strengthen our children’s voice

    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.

    Family members linked to SLC6A1-Spain during a spokesperson training organised by FEDER and AELMHU

    Sources

    See the original post on X (in Spanish)

  • Without science there is no future for rare diseases

    At SLC6A1-Spain we join the call “Without science there is no future” («Sin ciencia no hay futuro»). Biomedical research helps us better understand rare diseases and opens paths towards more accurate diagnoses, more appropriate care and new therapeutic options.

    For people and families living with a rare disease, every scientific advance matters. So does collaboration between research teams, healthcare professionals, institutions and associations, as well as continued support for rigorous projects focused on patients’ real needs.

    Research is a form of support

    Science does not offer immediate answers to every challenge, but it does build knowledge step by step. That sustained effort helps reduce uncertainty and improve understanding of rare diseases.

    That is why we believe research must have a stable place among social and healthcare priorities. We need rare diseases to remain visible and affected people to be listened to throughout the process.

    Always fighting by your side

    At SLC6A1-Spain we continue working to raise awareness of the SLC6A1-related syndrome, support families and promote an informed, collaborative and hopeful community.

    Solidarity, responsible outreach and a commitment to science help us move forward together. Without science there is no future, and together we can help build it.

    Sources

    See the original post on X (in Spanish)