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More about our team

Jo Balfour MD, CRDN

LORETTA MACINNES

Trustee, rare disease patient, rare disease parent

Loretta is a marketing and policy expert, and a writer. She worked in health technology for many years before becoming ill and eventually being diagnosed with Fabry, a rare disease. This affected both herself and two of her children. Her 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, My Fabry Disease, and to begin to advocate for people with rare disease.

Loretta has a degree in Biological and Biochemical Sciences, as well as a Masters in Writing for Film, Radio and TV. Her experience includes directing the International Telecare and Telehealth Conference, leading the communications for the national 3millionslives campaign and developing a patented anti-microbial product for the NHS.