Donegal's Public Service buildings light up to support Rare Ireland

Donegal County Council has today lit up their Public Service Buildings for Rare Ireland.

Their aim is to create awareness, offer support, and unite those living with this disease in the community.

"We strive to make the general public aware of the vast number of Irish people living with rare diseases," they posted. "It’s not rare to be rare”.

The chain of light is a symbolic way to break the isolation of those living with rare diseases. Rare Ireland is the only charity in Ireland supporting families affected by rare diseases/conditions. Rare is a parent-run charity and currently represents over 1,700 Irish families.

A rare disease is defined as a condition affecting less than one in 2000 people. Some 72% of rare diseases have identified genetic origins. Over 300,000 Irish people live with a rare disease, this is enough to fill Croke Park four times.

There are almost 8K known rare diseases, 70% of which start in childhood. Rare diseases are chronic, debilitating and often life-limiting conditions, 64% of all deaths from the National Paediatric Mortality Register data for the years 2006-2016 were accounted for by rare diseases.