Midlands to host rare disease conference and disability information day

A major Disability Information Day and Rare Disease Conference will be held in Athlone on Friday.

The event, hosted by Rare Ireland, will take place in the Sheraton Athlone Hotel.

This is the second annual conference and information day hosted by Rare Ireland.

The conference will be addressed by 13 speakers including people living with rare diseases, parents of children with rare diseases, rare disease researchers and professionals, including a genetic consultant.

The conference allows attendees to learn more about rare diseases and addresses the unmet needs of the rare community. The information day includes over 20 exhibits from some of Ireland's leading charities including LauraLynn Childrens Hospice, Inclusion Ireland, Irish Wheelchair Association, Family Carers Ireland, Little Blue Heroes and much more.

Bumbleance which is Irelands only interactive, childrens ambulance service works to transport sick children to and from hospital, will also be in attendance.

They will have an ambulance parked outside the door of the hotel to allow guests and members of the public to look around the vehicle and learn more about the service they provide.

Rare Ireland is a registered charity supporting families of children and young people living with Rare conditions. It was set up by two mothers of young girls after both families witnessed the lack of support and information available at the time of their daughter’s diagnosis. Athleon woman Laura Egan and Louise O’Keeffe turned a very difficult time in their lives into a positive by providing the much needed support to the many Irish families living with rare conditions. Rare Ireland now has almost 2,000 members, their childrens conditions include but are not limited to; chromosome abnormalities, autoimmune diseases, neurological conditions and childhood cancers.

A rare disease is defined as a condition that affects fewer than one in 2,000 individuals (in Europe). There are 6,000-8,000 identified rare diseases. Some 1 in 17 people, are living with a rare disease in Ireland, affecting almost 400,000 Irish people. Rare diseases are chronic, progressive, degenerative and often life-threatening. They carry with them significant levels of morbidity and disability, including cognitive, developmental, intellectual, mental, physical and sensory challenges, and are a significant contributor to early foetal loss and perinatal mortality, as well as infant and child mortality.

The conference is an annual event to raise awareness of rare conditions and welcome rare families, researchers, professionals and members of the general public to get together, educate one another and identify the needs of our large rare community.

It will also be attended by some 120 rare disease families, medical professionals and rare disease researchers. The disability information event is open to all members of the public and disability services.