rare diseases

Juan Carrión, president of FEDER.

We talk with the Spanish Federation of Rare Diseases (FEDER) to learn about the tasks they are performing to improve the quality of life of more than three million people in Spain who live with a rare disease, and to discover how Covid-19 has impacted them.

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RareConnect, a meeting point for people living with rare diseases.

This international platform has been developed by non-profit organisations and allows participating in online discussion groups and communities to network with other patients.

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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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The importance of the associative movement and volunteering when dealing with these diseases.

Opinion