Rare Ireland to host awareness event and conference in Athlone on Friday

Rare Ireland is hosting its first disability awareness event and rare disease conference this Friday, September 30, in the Sheraton Hotel in Athlone.

In attendance on the day will be some of the countries leading children’s and disability charities including Jack and Jill Foundation; LauraLynn children's hospice; Bumbleance Children’s Ambulance service; Family Carers Ireland; Inclusion Ireland; Little Blue Heroes; Financial Wellbeing and many more.

The event will also feature 20 disability awareness information stands and 20 speakers who will speak about the challenges of living with a rare disease, the need for adequate support and research, and provide information on what supports are available for families.

Rare Ireland Family Support Network is the only organisation in Ireland set up to specifically support families living with rare conditions. It was founded by two mothers of children with rare chromosome disorders and is run by a committee of rare disease parents who have first-hand experience of the difficulties and the joys of raising rare children.

Every family is unique and Rare Ireland offer supports based on the needs of each individual family. They also strive to raise awareness of rare conditions, celebrate milestones and show the public the beautiful faces of rare disease in Ireland.

The Athlone Conference organised by Rare Ireland is a unique opportunity for parents across the Midlands who have a child with a rare condition to meet other like-minded parents and gain access to a wide range of information and supports.Laura Egan from Athlone and Louise O'Keeffe from Dublin, both of whom have daughters living with rare chromosome disorders, teamed up in March 2017 to establish the Rare Ireland support network.

The event gets underway in the Sheraton Hotel at 10am this Friday, September 30, and will conclude at 4pm. All are welcome.