Athlone to host rare disease conference next week

Rare Ireland, the national charity supporting families of children and young people living with rare conditions, will host its annual Rare Disease Conference on Friday, October 16, at the Shamrock Lodge Hotel, Athlone.

The event brings together patients, families, researchers, clinicians, and Ireland's leading children's and disability charities for a day of talks, information and peer support for the rare disease community.

The conference will feature a programme of speakers who will address the lived experience of rare conditions, the ongoing need for adequate research and support services, and practical guidance for families navigating a rare diagnosis. Speakers, who bring a wide range of perspectives, include that of rare disease patients and parents with lived experience, researchers from University College Dublin, a speech and language therapist, a physiotherapist, and representatives from support organisations. They will be joined by clinicians including Elizabeth Barrett, Child and Adolescent Psychiatrist, and Prof. Anand Saggar, Consultant in Clinical Genetics.

Rare Ireland was set up by two mothers of young girls, Athlone woman Laura Egan and Louise O'Keeffe, after both families experienced a lack of support and information at the time of their daughters' diagnoses.

Billy Kelleher MEP, who has a keen interest in rare diseases and the unmet needs of the rare community, will officially open the event. Organisers say they anticipate a strong turnout of political and HSE representatives.

“Rare Ireland is delighted to welcome everyone to this year's conference, bringing together patients, families, clinicians, researchers and advocates from across the rare disease community,” a spokesperson said.

This year's event promises to be one of our most impactful yet, with a rich programme of discussion, insight and connection aimed at improving outcomes for people living with rare conditions in Ireland. We are especially delighted to have Billy Kelleher as part of this year's event. His continued engagement with the rare disease community and support for the issues that matter most to our members will add real value to the conversations taking place throughout the conference.”

More than 300K people in Ireland are living with a rare disease. A rare disease is defined as a condition affecting fewer than 1 in 2,000 people, yet collectively rare diseases affect a significant share (6%) of the population, making awareness, research funding, and family support a continuing priority.