Jill Prawer was born with the ultra-rare condition Lipoprotein Lipase Deficiency. Jill wrote the only patient-friendly information sheets about the condition (now hosted on the HEART UK website) and in 2012 set up the LPLD community on RareConnect. The site now has over 100 members. Being the ‘go-to’ patient with LPLD in the UK, Jill has worked with the EMA, Pharmaceutical companies and the media. Trained as an existential and humanistic counsellor, Jill worked in different areas before the second of her three children was diagnosed with a brain tumour in 2005. Jill offers telephone counselling through the charity brainstrust, is in the process of setting up a charity for people with LPLD, is a carer for her son, and a ‘Football Mum’ to her youngest daughter who plays for Chelsea Ladies Football Academy.