Adam King, born with a rare brittle bone condition called osteogenesis imperfecta, a rare lifelong genetic condition of bone and connective tissue has partnered with Rare Diseases Ireland to #RaiseAToastie to raise awareness and support for people living with rare conditions across Ireland ahead of Rare Disease Day on February 28th.
Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland. RDI represents the united voice of all of those who have or are at risk of developing a rare condition, and their family members. On Sunday 27th of February RDI is hosting their annual #RaiseAToastie campaign and is encouraging everyone to create their favourite and most unique toasties with their friends and family and share them on social media. RDI are asking everyone to:
“#RaiseAToastie and raise awareness for people living with rare conditions”.
“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.” said Vicky McGrath, CEO of Rare Diseases Ireland.
“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.”
RDI are asking everyone to share their toastie creations on social media on February 27th using the hashtags #RaiseAToastie and #RareDiseaseDay. Participants are also kindly encouraged to donate to RDI, where funds will be allocated to supporting development of genetic services in Ireland. Fota Wildlife Park has kindly gifted a Conservation Annual Pass to be given away to one lucky participant.
For more information, please go to RDI.ie