The voice for families
living with rare
conditions in Ireland
who we are
The Story Of Rare Ireland
Rare Ireland was set up in 2017 by two mothers of daughters with rare chromosome disorders, Laura Egan and Louise O’Keeffe.
Rare Ireland was initially set up as a Facebook support group for parents of children and young adults living with rare conditions and was successful in obtaining charity status in February 2022.
What we do
How We Help
Our Advocacy Work
Rare Ireland are dedicated to working on behalf of the rare community, highlighting the needs of the families affected by rare conditions and identifying areas where we can influence change to improve services.
Our Support
The lack of education and awareness surrounding rare disease is evident in Ireland. Rare Ireland strives to be the voice of rare families in Ireland by advocating on their behalf.
Raising Awareness
We also take part in different policy forums, including the Rare Disease Strategy, National Genetics & Genomics Steering Group, and a number of other programmes.
Latest News
Rugby ace James Lowe to open up about living with rare disease
Rugby Star James Lowe Opens Up About Living with Rare DiseaseIrish rugby international James Lowe
Alan & Michelle embark on a journey to advocate for those affected by multiple sulfatase deficiency
Alan Finglas, alongside his wife Michelle, embarked on a journey to advocate for those affected
National Rare Disease Strategy 2025 – 2030
The National Rare Disease Strategy 2025 - 2030 sets out a vision to improve the
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