Inês Alves on the power of lived experience in shaping rare disease policy
In this episode of Rare on Air, host Julien Poulain speaks with Inês Alves, a Portuguese advocate, researcher, and mother whose journey into rare disease advocacy began with her daughter Clara’s diagnosis of achondroplasia, a rare bone condition impacting skeletal growth.
Inês recalls the shock of hearing the word 'achondroplasia' for the first time, the early uncertainty of navigating a rare diagnosis with little guidance, and how that experience led her to create Beyond Achondroplasia — a multilingual information hub now supporting families worldwide. She explains how this effort evolved into founding ANDO Portugal, which celebrates its tenth anniversary this year, and how patient networks have transformed understanding of skeletal dysplasias in Europe.
As a patient representative in ERN BOND and member of the European Medicines Agency’s Committee for Orphan Medicinal Products, Inês offers a rare insider view of how lived experience helps shape research and regulation. She reflects on the progress made toward genuine patient involvement, the risks posed by efforts to reduce patient representation in EMA committees, and why collaboration, evidence, and empathy remain essential for rare disease progress.
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