Athlone woman's photo being displayed in St Stephen's Green for rare disease campaign

A photographic portrait of young Athlone woman Alanna Egan has gone on display in St Stephen's Green in Dublin as part of a new campaign raising awareness of those living with rare diseases.

Alanna (23) lives with Koolen de Vries syndrome, a genetic condition that results in learning disabilities and low muscle tone.

She is one of 17 'changemakers' who are sharing their stories as part of the I Am Number 17 campaign in order to promote better understanding and awareness of rare diseases in Ireland.

The name of the initiative, I Am Number 17, reflects the fact that 1 in 17 people in Ireland will be affected by a rare disease at some point in their lives.

In St Stephen's Green this week, a month-long photographic exhibition as part of the campaign was launched by Minister of State Anne Rabbitte.

Those in attendance at the launch included John McCormack, Chair of Rare Diseases Ireland (RDI), Louise O’Keeffe, co-founder of Rare Ireland, and Roscommon-Galway TD Denis Naughten.

The exhibition features portraits by award-winning photographer Julien Behal of Alanna and the other 16 changemakers being spotlighted in the campaign.

It went on display on Monday, February 26, and will continue for one month.

"Rare diseases are more than medical conditions; they are human challenges that affect individuals and families deeply," said Vicky McGrath, CEO of Rare Diseases Ireland.

"The I Am Number 17 exhibition is a vital platform for these 17 changemakers to share their journey, fostering understanding and empathy across our society."

Alanna Egan's mother, Laura, is a co-founder of the Rare Ireland support network.

The campaign was initiated and funded by Takeda Products Ireland Ltd. in partnership with Rare Diseases Ireland (RDI) and Rare Ireland. More details are available at: www.iamnumber17.ie