RD Portugal – A Digital Platform to Give a Voice to Rare Diseases
RD-Portugal is a non-profit association that, since 2021, has united and represented more than 45 rare disease associations, patients and families. In just five years it has established itself as a leading voice in this field: it is the Portuguese member of the EURORDIS Council of National Alliances, is part of the ERDERA (European Rare Disease Research Alliance) National Mirror Group, and took part in the working group behind the national Action Plan for Rare Diseases 2025-2030. A cause that concerns around 6% of the population: more than 600,000 people in Portugal.
CIGA was challenged to develop a new web platform that would live up to this journey and to the diversity of the association’s work. The goal was clear: to bring together in a single digital space its member associations, a broad Scientific Council, projects, institutional documentation and news, communicating in an accessible, approachable way and with the credibility the subject demands.
We developed a modern, responsive platform with a clear structure and navigation designed for very different audiences: patients and families, associations, healthcare professionals, partners and decision-makers. The website highlights the member associations and the specialists of the Scientific Council, presents RD-Portugal’s projects (CUIDARaro, Informar sem Dramatizar and Roadshow), organises governing bodies, protocols, reports and official documents, and includes a news section, newsletter subscription, testimonials and a supporters and donations area. For anyone who has just received a diagnosis, the message is clear from the very first page: “You are not alone.”
More than an institutional website, this platform is a tool for representation and mobilisation: a meeting point for the entire rare disease community in Portugal, strengthening RD-Portugal’s voice in society and keeping this issue on the public agenda all year round.