RARE DISEASES

Led by Larissa Kerecuk at Birmingham Childrens Hospital.

Can you help?

Get in touch with us if you have projects or expertise that could assist Larissa or Children’s Rare Diseases tech development.

About Larissa…

Dr Larissa Kerecuk is the Theme Lead for the Rare Diseases Theme. She is a Consultant Paediatric Nephrologist at Birmingham Children’s Hospital (BCH). She is the Rare Disease Lead for BCH where the world’s first Paediatric Rare Disease Clinical Centre will open in 2017. Dr Kerecuk is also the NIHR Specialty Lead for the West Midlands CRN and Lead for 100000 Genome Project at BCH with over 6% of all UK participants. She is a member of the Management Committee of Rare Disease UK (RDUK).

About Rare Diseases…

Individually rare diseases are ‘rare’ but collectively are common. A rare disease is a condition that affects less than five in 10,000 of the general population. There are 6,000 to 8,000 recognised rare diseases and 1 in 17 people will be affected by a rare disease (approximately 3.5 million people in the UK) of which seventy-five percent affect children. Thirty percent of rare disease patients will die before their fifth birthday. Technology is required to aid diagnosis, prolong life, support children through development, aid communication, mobility and social interaction.