Birmingham Children's Hospital is launching a £3.65 million appeal to raise money to build the UK's first rare diseases centre for children.
More than 9,000 children are treated at the hospital every year for over 500 rare diseases.
Current patient - 12-year-old Callum Read - will launch the fundraising efforts today.
He was born with a condition called Kyphoscoliosis, which is characterised by an abnormal curvature of his spine that affects his growth.
What makes Callum's condition so rare is that his spine is curved as well as twisted, which if left untreated would crush his internal organs.