A charity lit up several buildings across Dublin last night to commemorate Rare Disease Day.
Louise O'Keeffe set up Rare Ireland after learning that her daughter had a disease called Neurofibromatosis Microdeletion Syndrome, which causes multiple tumours to grow in the body. Louise wanted to spare other families the loneliness she experienced following her daughter's diagnosis and was soon joined by other parents.
Rare Disease Day commemorations ended on Monday with buildings being lit up across the country. Trinity College, the Convention Centre and Swords Castle showcased the rare disease colours of pink, blue green and purple as a symbolic gesture.
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Louise told Dublin Live: "We had sponsored swims over the weekend which took place in Dublin. Coffee mornings took place all over the country and we had lots of get togethers this evening through the buildings."
Louise encouraged parents who deal with rare diseases to come forward for support. She explained that the diagnostic process can be especially lonely when children are suffering with little-known illnesses.
She said: "You often go on a waiting list for a genetic counsellor who explains the disease to you, but you can be on the list for typically two to three years. We're stronger together and we want people to know that they don't have to do this alone."
Rare Disease Ireland members joined hands with Dara Wood, a health advocate for genetic disorder Hereditary Haemorrhagic Telangiectasia, at the ceremony. Buildings outside of Dublin were also lit up as part of the group's advocacy.
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