Rare Ireland

We are a parent led charity, set up in 2017 to ease the isolation of families of children diagnosed with a rare condition. Spotting the gaps in the system, the lack of support and information available to parents and witnessing the isolation associated with rare disease in Ireland we decided to create a network for families to ease this isolation and raise awareness of the challenges rare families face. What we do: We provide a safe space for parents within our network to engage with other rare parents. We put families of children with the same rare condition in contact with each other. We send gift boxes to rare children during hospital stays. We subsidise therapies for children with rare conditions. We subsidise counselling sessions for families post diagnosis. We stay linked in with other rare disease organisations and work together in an effort to improve care pathways for people living with rare conditions. We keep our social media platforms extremely active, raising awareness and showing the general public the faces of rare disease in Ireland. Our members: We accept members from all over Ireland with any rare condition. In membership we currently have over 1.5k members, the conditions represented include but are not limited to; Chromosome Disorders Autoimmune Diseases Neurological Conditions Metabolic Disorders Progressive Diseases Childhood Cancers We are not a condition specific group, there is no age limit and membership is free of charge. How it was founded (a note from our Founders Laura & Louise): Alanna and Ella, Rare Ireland Family Support Network was founded for you both and all the other children who joined the rare journey. It was founded to make life easier for you and so you all get the acknowledgment and awareness you deserve. We thank our Committee who work tirelessly in the background to keep our rare group growing. We are so proud to have started this network in honour of our two amazing girls.