Loretta MacInnes is a patient advocate and a writer. In her life before diagnosis, she worked as a marketing and policy expert within health and care technology. A severe health exacerbation led to her diagnosis with Fabry, a rare disease. This affects both herself and two of her children. She has a keen interest in the evolving genomics landscape, particularly as it was genetic testing that ended her own diagnosis odyssey. Personal experience of the path to diagnosis; of teenage to adult health transition; and of the lack of support for young adults, particularly around mental health, lead her to set up her own website, www.myfabrydisease.com, and to begin to advocate for people with rare disease.
Loretta is a Trustee of Cambridge Rare Disease Network. and sits as a patient voice for both the PAGE Group and the East Genomics Medicine Services Alliance (East GMSA).