Cork's Adam King 'raises a toastie' to raise awareness of rare diseases 

Cork’s Adam King has partnered with Rare Diseases Ireland (RDI) to #RaiseAToastie to raise awareness and support people living with rare conditions across Ireland.

Adam was born with a rare brittle bone condition called osteogenesis imperfecta, a rare lifelong genetic condition of the bone and connective tissue.

The young Cork boy stole the hearts of the nation on the Late Late Toy Show in 2020 where he shared his dreams of becoming a CAPCOM at NASA and his challenges with the lifelong brittle bone condition.

At a time when human connection was more important than ever, the world was introduced to Adam’s Virtual Hug, and Adam went on to donate €266,830.52 between Cork University Hospital Charity and Children's Health Ireland at Temple St through the sale of his virtual hug cards.

RDI is the national alliance for rare disease patient organisations in Ireland which 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, February 27, 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.

The CEO of Rare Diseases Ireland, Vicky McGrath, said: “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 January 31 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.” 

RDI is asking everyone to share their toastie creations on social media on February 27 using the hashtags #RaiseAToastie and #RareDiseasesDay.

Participants are also encouraged to donate to RDI, where funds will be allocated to supporting the development of genetic services in Ireland.

For more information, visit www.rdi.ie.