Rare disease campaigner from Athlone up for 'unsung hero' award

Athlone woman Laura Egan, who set up a support network for parents of children and young adults living with rare conditions, has been nominated for a national 'unsung hero' award.

Laura Egan, who has a daughter living with a rare chromosome disorder, teamed up with another parent, Louise O'Keeffe, to establish the Rare Ireland support network in 2017.

Laura's friend Erica O'Meara nominated her for RSVP's 'Unsung Hero' award, and she has been shortlisted as one of the top ten nominees.

People can vote for Laura on the RSVP website here

The public vote remains open until 12 noon on Tuesday next, May 31, and the overall winner will receive a weekend away in Kildare to the value of €1,400.

In a post on Facebook, Rare Ireland outlined how Laura's work had inspired many other families living with a rare disease.

The local woman showed great dedication and courage in setting up the support network five years ago, all the while caring for her own daughter, who is living with Koolen-de Vries Syndrome, as well as her other two children.

Laura is well-respected within the rare community as someone who is always open to providing advice and helping others on their own journey.

She is someone who has experienced firsthand the rare diagnostic odyssey and the lack of services and support available post-diagnosis.

Her daughter Alanna is 21 now. All those years ago, when the family were starting off on their rare journey, there was very little support or services available.

Rare Ireland had evolved over the last few years and Laura is responsible for much of its day-to-day work behind the scenes. She has been there to support many families at the most vulnerable of times.

Erica O'Meara, a fellow Rare Ireland committee member, recently suffered the loss of her beloved husband Trevor, who died last year following a battle with a brain tumour.

Erica said that, following the bereavement, Laura "remained a true friend, constantly touching base with me and my children. Helping to mark those emotional firsts that all bereaved families have to go through.

"She has done so much behind the scenes without wanting any recognition all while looking after her own family including her daughter who is living with a rare condition.

"Laura is the very definition of an unsung hero."