Geneva Pattison
Our favourite little fighter Adam King will be celebrating Rare Disease Day in the best way possible, by raising a toastie to raise awareness for rare diseases! Born with a rare condition called osteogenesis imperfecta, Adam didn’t let that fact get in the way of his big visit to RTE studios, stealing all our hearts during the Late Late Toyshow in 2020 and brightening up everyone’s night.
Adam’s condition, osteogenesis imperfecta, means that he is unable to grow strong bones, making them brittle and prone to damage. Rare Disease Day occurs at the end of February every year, this year Rare Diseases Ireland are asking everyone to #RaiseAToastie on February 27th and share their toastie creations online. Rare Diseases Ireland (RDI) is the national alliance for patient organisations for those with rare diseases. The RDI strive for equitable access to diagnosis, treatment, health and social care for people living with rare conditions, as well as creating and sourcing equal opportunities for them.
As mentioned by RDI’s CEO, Vicky McGrath:
“Having a rare condition can be incredibly frustrating for the person and families of those affected. As an example, a challenge encountered by many is the search for a diagnosis. Our Rare Reality report, published Jan 31st of this year, reveals that more than a third (37%) waited over five years for their diagnosis. It is estimated that there are 300,000 people living with rare conditions in Ireland. It is critically important that they are supported and that their voices are heard. We are asking everyone to Raise a Toastie and show their support ahead of Rare Disease Day this year.”
People are also being asked to donate what they can on the 27th of February, to help fund adequate genetic services in Ireland and to use the hashtags #RaiseAToastie and #RareDiseaseDay to be in with the chance to win a Conservation Annual Pass to Fota Wildlife Park!
Rare Disease Statistics for Ireland.
There are an estimated 300,000 people living with rare diseases in Ireland.
72% of rare diseases are genetic in origin. A rare disease does not just impact the affected individual. A rare disease has implications for everyone in the immediate family unit and the wider family too; grandparents, aunts, uncles, cousins, second cousins.
70% of rare diseases are exclusively paediatric onset.
At least 4% of children in Ireland are diagnosed with a rare disease, a life-long condition, by age 17.
Approximately 2/3 of paediatric deaths in Ireland are associated with rare diseases.
To keep up to date with RDI and for more information about about Rare Disease Day visit the RDI social media:
Instagram: @rare_diseases_ie
Twitter: @RareDiseasesIE
Facbook: @rarediseasesireland
For more information or to make a donation visit: www.rdi.ie/d
