Rebecca was diagnosed with familial partial lipodystrophy, dunnigan variety at age 17, in 2000. Initially, there was no support group available and so after getting in contact with other patients, she and Zoe Herrera set-up an informal support group for lipodystrophy patients in the UK in 2002. This group established it’s first website c2003. Regular Patient Support Group meetings have been organised over the years in conjunction with the Severe Insulin Resistance (SIR) team at Addenbrooke’s Hospital, Cambridge, and Rebecca also helped with the successful application for UK National Designation of Extreme insulin resistance and lipodystrophy service. Rebecca has been a research scientist in the field of molecular biology for over 14 years and so is well placed to understand the biological mechanisms of the condition as well as equipped to collaborate with medical and scientific experts. She is equally involved in various activities related to patient advocacy, education and awareness.

Siobhan was diagnosed with familial partial lipodystrophy in 2017 as the result of another family member being diagnosed. Recently two out of her three children have been confirmed to also carry the gene. Siobhan is used to juggling family life, with running her own business, while fulfilling her role as the Chair of a school PTA. Meaning that she is organised and proactive, and experienced in fundraising and promotions. Siobhan is passionate about learning everything there is to know about lipodystrophy and raising the profile of LDUK for the benefit of current patients and future generations.