The initiative aims to amplify the voices of individuals living with rare diseases in Ireland.
In a bid to shed light on the challenges faced by those living with rare diseases, a photography exhibition featuring 17 individuals, dubbed '17 Changemakers,' has been launched at The CHQ Building in Dublin today.
The initiative aims to amplify the voices of individuals living with rare diseases in Ireland and strengthen awareness about the prevalence and impact of such conditions.
The exhibition showcases striking portraits of the '17 Changemakers,' captured by renowned photographer Julien Behal, alongside their compelling stories.
Among the featured individuals is four-year-old Cian McCarthy from Naas, who bravely battles NARS1, an ultra-rare neurological condition discovered as recently as 2021.
NARS1 was only identified within the last three years by Stephanie Efthymiou and her team in a London laboratory. Stephanie, who leads the scientific board of the Rory Belle Foundation, actively fundraises to support ongoing research into NARS1.
Before the discovery of NARS1, many individuals, like Cian, remained undiagnosed for years.
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