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[HEALTH] · Italy · 5 sources

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Aimps highlights challenges for families facing mucopolysaccharidosis diagnosis

Valeria Ranzi, Vice President of the Italian Mucopolysaccharidosis Association (Aimps), addressed the profound disorientation and instability families experience upon receiving a diagnosis of mucopolysaccharidosis. Speaking at the Rome Film Festival during the presentation of the docufilm ‘Vite in campo’, Ranzi noted that because the condition is rare, families often feel isolated and uninformed.

Ranzi emphasized that the association provides essential support to help families navigate the medical, emotional, and bureaucratic complexities of the disease. This includes connecting newly diagnosed families with others who have prior experience and offering guidance on healthcare support and social security through agencies such as INPS.

Entities

Chiesi Italia · INPS · Italian Mucopolysaccharidosis Association · Rome Film Festival · Valeria Ranzi