Rare Diseases International

Àlex, Glòria and Lluc, in the garden of their house in Manlleu.

We spoke with Àlex Roca, Lluc’s father and promoter of Petits Superherois (Small Superheroes), an association of parents of children with centronuclear myopathies.

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Flaminia Macchia, the executive director of Rare Diseases International.

On the occasion of Rare Disease Day, we interview the executive director of Rare Diseases International, a network of 76 member organisations representing rare disease patient groups in over 100 countries worldwide.

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