Athlone's Alanna features in rare disease awareness campaign

Athlone's Alanna Egan is turning her rare disease into a platform for awareness and understanding.

The local woman is being featured in a new rare disease awareness campaign, called 'I Am Number 17', which was launched in Dublin today by Health Minister Stephen Donnelly.

The campaign was initiated and funded by Takeda, a pharmaceutical research and development firm, in partnership with Rare Diseases Ireland (RDI), and Rare Ireland, a support network co-founded by Alanna's mother, Laura.

The 'I Am Number 17' campaign features 17 'changemakers' – individuals from all over Ireland living with a rare disease – who are sharing their stories to promote better understanding and awareness of rare diseases in Ireland.

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

Despite these challenges, Alanna leads a vibrant life, working as a hotel receptionist and attending St Hilda's day centre for adults with intellectual disabilities. She cherishes her two dogs, adores Disney movies, and is a fan of musicals.

Alanna is a daughter of Laura and Anthony, and has a sister, Shannon, and a brother, Darragh.

The campaign title, '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.

A campaign website has been launched, which includes profiles of the 17 featured changemakers, and they have also been photographed for an exhibition by award-winning photographer Julien Behal which will be on public display from tomorrow (February 8) at The chq Building in Dublin.

Speaking at the launch of the campaign, the Minister for Health described it as "an important step in raising awareness of rare diseases and recognition that while individually rare, collectively these conditions have significant impact in Irish society."