The Office for Rare Conditions is working to put the patient to the forefront, providing information and support to all affected by rare and undiagnosed conditions.
Rare Disease Day 2021!
Rare conditions affects 1 in 17 people. That’s over 400,000 people in Scotland! Together we aren’t that rare!
Thank you to everyone that sent in their photos/videos/story to help us celebrate Rare Disease Day 2021!
This is Harlow.. she’s my “someone rare”. She was diagnosed with Noonans syndrome and then admitted for failure to thrive at just 4 months old. She has a heart condition, cancer screenings are part of her little life, is fiercely protective of what she thinks is the right thing, and will never ever be told she’s not the queen! She makes it all worth it and I’m better having been given the gift of raising her. Long live the queen! #noonansyndromeawareness – Christina, Harlow’s Mum
Nicole and Jessica’s Story
Our little Kai John who is 2 and a half is having a nice breakfast at the Zebra cafe this morning, he has Pierre Robin Sequence and required a tracheostomy at birth! He wishes he was at the party like usual years but can’t wait to next time! -Toni, Kai John’s mum
The Office for Rare Conditions Team wishes you a lovely Rare Disease Day and thanks you for your continued support!