Annual Conference & 10 Years Celebration Charity Ball

How it all began...

Picture this: You've just received news that changes everything. Your child has been diagnosed with a rare condition you've never heard of, and suddenly you're drowning in medical terminology, uncertainty, and fear. The doctors hand you a diagnosis, but no roadmap, no support system, no reassurance that you're not alone in this frightening new world. This was the reality for Laura Egan and Louise O'Keeffe when their daughters Alanna and Ella were diagnosed with rare conditions; two Mams, unsure and isolated. They found each other online in 2016 and discovered something powerful -  they weren't alone.

From their shared fear and determination grew something beautiful, a lifeline for other families facing the same overwhelming journey. In 2017, what started as two mothers supporting each other blossomed into Rare Ireland, because no family should have to cross borders just to find someone who understands their struggle. From a simple Facebook support group to achieving national charity status on Rare Disease Day 2022, Rare Ireland has become the beacon of hope that Laura and Louise desperately needed but couldn't find.

What makes Rare Ireland truly extraordinary is this: every person who runs this charity walks the same path as the families they serve. Each of our 13 committee members are parents and knows the sleepless nights, the medical appointments, the daily challenges - because they live it too. They don't just sympathise; they understand with every fibre of their being. These parents pour their hearts into this work because they know that somewhere tonight, another parent is experiencing that moment of diagnosis for the first time.

Why Support us? Today, Rare Ireland stands as proof that from our deepest challenges can come our greatest purpose. Every ticket you purchase for our Charity Ball, doesn't just support an event- it supports a mother holding her breath in a hospital corridor, a father Googling symptoms at 3am, a family who just needs to know they're not facing this journey alone. Your support ensures that no Irish family will ever again have to search beyond our borders for the understanding, resources, and community they deserve. Because when Rare becomes real in your life, you shouldn't have to face it alone.

Rare diseases affects 1 in 17 people in Ireland

Rare Ireland is a registered charity founded by families for familes

CRA Number :20206340

CHY Number: 23034