Rebecca Whiteley

Rebecca started her nurse training in 2012 at Sheffield Hallam University. After qualifying in September 2015, she started her first staff nurse position on the neurology and neurosurgery ward at Sheffield Children�s Hospital. She then worked in the emergency department before moving to London and gaining a position on the Metabolic, Endocrine, and Gastroenterology investigations ward at Great Ormond Street Hospital for Children. During her time there, she cared for children with varying metabolic diagnoses and developed a passion for caring for children with Lysosomal Storage Disorders.In August of 2018, she assumed the role of Metabolic Nurse Specialist at Great Ormond Street Hospital, later progressing to her current, more senior role as Metabolic Clinical Nurse specialist. She has also held the role of Batten Disease Clinical Nurse Specialist, which involved working alongside the Batten Disease Family Association (BDFA), to support families with all types of Batten disease throughout the UK and delivering Cerliponase Alfa infusions to patients at Great Ormond Street hospital with CLN2. Rebecca�s current responsibilities include co-managing a caseload of over 200 patients diagnosed with a Lysosomal storage disorder. Her role has involved working closely with all members of the MDT and offering support to parents and their families.