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.
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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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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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