Elsie Evans

Elsie Evans is a passionate advocate for education, empowering others through skill development, and fostering understanding. Originally from South Africa, she now resides in the UK. With over 20 years of experience, Elsie has dedicated her career to supporting individuals with special educational needs, including neurodiverse learners, communication difficulties, and behavioral support strategies.

Elsie’s unique perspective comes from her experience as a person living with Homozygous Familial Hypercholesterolemia (HoFH). She actively amplifies patient voices through engagement, awareness, and education, using her educational background as a powerful tool. As the Ambassador Programme Project Manager at FH Europe Foundation, she collaborates to make a genuine difference for individuals living with FH, their families, and communities. Her work focuses on increasing health literacy and awareness to drive positive health outcomes.

As a patient ambassador, Elsie often speaks on behalf of patients, especially when it comes to advocating for HoFH as a rare disease. Her involvement in advocacy includes completing the Open Accademy School on Scientific Innovation and Translational Research with EURORDIS in 2024 and joining the “Mentally Healthy Toolkit” working party established after the ERDC. She is assisting in the development of the new ambassador group in collaboration with FH Singapore. She also completed the EUCAPA fast-track training on HTA and innovation. She was a speaker and patient ambassador at the 2024 EAS Congress and FH Paediatric Symposium. PerMedFH and PERFECTO are the current EU projects where she serves as a patient and education representative. She has previously, with co-authors, successfully submitted a poster to the ERDC on HoFH survey results.

She continues to assist in preparing and supporting ambassadors for engagement, such as serving as speakers in health technology for care or creating patient stories—heart heroes—for the WHF.

“Women and cardiovascular disease” remains an area of interest. Understanding the impact of mental health when living with FH as part of the Mental Wellbeing Partnership Network, early detection and prevention by engaging as a member of the new-born screening working party at EURORDIS, the impact of legislation changes through collaboration in the EPF Working Group, creating a patient-centred definition of unmet medical needs, and calling for cardiovascular health to be a priority in EU policy, she joined other ambassadors and EACH at the Strasbourg meeting in 2023. She continues her own development, participating in EJPRD training on leadership and communication skills for patient organisations (Gdansk).