Rare Diseases International

New York hosted a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) to discuss how addressing the challenges faced by this group of people.

People with rare diseases call for recognition and visibility within the UN system

New York hosted a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) to discuss how addressing the challenges faced by this group of people.

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

Àlex Roca: "It’s not right that all the healthcare responsibility should fall on the parents of small children"

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.

Flaminia Macchia: “Rare diseases are often ignored by public policies, the journey towards full inclusion is long”

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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