Yesterday’s visit was not the first time the Martin family have been to Aras an Uachtarain, but, that didn’t make it any more special.
The occasion was Rare Disease Day, with President Michael D. Higgins throwing up his doors to kids from all over the country.
As well as families from the rare disease community, also present was John Brady TD, who said, “The reason the event was held in Aras an Uachtarain is down to hard work of Wicklow man Les Martin and his campaign to expand the Newborn Screening Programme. In his travels, he met with President Higgins and convinced him of the merits of hosting a party at his home to celebrate the diverse rare disease community of Ireland on Rare Disease Day.”
Fair fecks. Held on the last day of February every year, Rare Disease Day helps to raise awareness not only of the diseases themselves but also the access to treatment and medical representation for the individuals and their families.
In Ireland, there are between 6,000 and 8,000 rare diseases – not sure why that number isn’t more specific – with approximately 300,000 people in Ireland living with one. “There’s a lot of work to be done to ensure Ireland stops failing so many citizens,” continued Brady. “A starting point needs to be implementing the National Rare Disease Plan.”
You can find out more about that plan here, and about Cogs & Kiwi and the Martin Family right about here.
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