Living with Rare Disease

28 February is Rare Disease Day, which raises awareness for the 300 million people across the world living with a rare disease.

Here, we meet Julie Robinson who lives with a rare genetic skin condition and is under the care of Dr Neil Rajan, a NIHR Newcastle BRC investigator, an honorary consultant dermatologist at Newcastle Hospitals and senior lecturer at Newcastle University with a strong interest in clinical research.

Julie lives in Harrogate and has CYLD Cutaneous Syndrome (CCS) – a rare genetic condition due to a fault in the CYLD gene. It causes the development of multiple benign skin tumours on the scalp and body.

Read more about Julie’s story at https://www.newcastle-hospitals.nhs.uk/news/living-with-rare-disease-julies-story/