“I am number seventeen”

Alanna is 23 and is living with Koolen-de Vries Syndrome. She is affected in many ways including moderate intellectual disability, low muscle tone and anxiety. As a changemaker she hopes her experiences will inspire other young people in her situation and educate the public about the unseen struggles of living with a rare disease. Alanna is very proud to feature as one of the changemakers in “I am number seventeen.”

I am number seventeen is a rare disease public awareness campaign. This campaign which was initiated and funded by Takeda Products Ireland, in partnership with Rare Ireland and Rare Diseases Ireland aims to raise awareness and understanding for the 300K+ Irish people living with a rare disease.

I am number seventeen features 17 changemakers, all affected by rare diseases. It highlights their lives, individual personalities and achievements. The campaign launched in Ireland yesterday. It was officially launched by Stephen Donnelly, minister for Health and featured a beautiful exhibition of photos of the 17 changemakers. This campaign puts the patient in the spotlight, rather than their rare disease and shares the message that “it’s not rare to be rare”, in fact 1 in 17 people in Ireland will be affected by a rare disease at some stage in their lives.