Rare Ireland is a parent run charity supporting families living with rare conditions in Ireland. Set up in 2017 by 2 mothers who’s daughters were both diagnosed with rare conditions. This support network was formed after both families witnessed the lack of support and information available to them at the time of daughter’s diagnosis.
Rare Ireland now has a committee of 12 mothers who all work on a voluntary basis to bring support to almost 1700 Irish rare families.
After a rare genetic diagnosis, families are added to a two year waiting list to see a genetic consultant. This appointment gives the family all the information available about their condition, how it may impact their lives and the likelihood of the same condition recurring in subsequent pregnancies. Rare Ireland works closely with a private genetic consultant and offers financial assistance towards appointments, allowing our families to receive information in a more timely manner.
Rare Ireland also provides financial assistance towards speech and language therapy, occupational therapy, physio therapy, music therapy, play therapy and any other therapies our families need for their rare children and young adults to reach their potential.
People living with rare conditions face many prolonged hospital stays. Rare Ireland recognises the challenges facing our rare young people and their families during hospitalisations. We send gift boxes and care packages to hospitals for our rare members to lift their spirits and make their stay easier.
As carers for children and young adults with rare conditions we acknowledge the strain this can have on mental health. Rare Ireland offers financial assistance for counselling sessions for families who are struggling with the impact of the rare conditions affecting their family, parents who are coming to terms with the diagnosis, families who have sadly lost their rare children and couples who’s relationships are strained due the complexity of the child’s needs. We offer this service to both parents/carers and siblings who are having difficulty coping.
The lack of education and awareness for rare disease is very prevalent in Ireland. Rare Ireland strives to be the voices for rare families in Ireland by advocating on their behalf and working closely with other organisations and researchers, taking part in projects in the hope that they will improve care pathways and address the unmet needs of the rare disease community.