During 24–28 June 2024, the annual #GenomicsConversation campaign will return for its seventh year, this time with a focus on genomics journeys.

The awareness-raising week will feature stories and activities that reflect the genomics journeys of NHS professionals and patients, and well as looking at the impact this has had on clinical care – and the direction of travel in the future. Each day of the week will focus on one of five key themes:

Day 1: ‘Are we there yet?’ Genomics in the NHS
Day 2: Pioneers and explorers: Navigating genomics
Day 3: Ticket to ride: Patient experiences
Day 4: Uncharted journeys: What lies ahead?
Day 5: To boldly go: Chart your own genomics journey

Loretta MacInnes is a rare disease patient and parent, with lived experience of genetic testing and living with a diagnosis of Fabry Disease, teenage to adult health transition, and the lack of support for young adults, particularly around mental health.

She has worked across private and public sector partnerships producing change across digital health, technology-enabled care, and enterprise. Loretta was also the Communications Lead for the NHS England 3millionlives initiative.

Loretta now runs her own website and blog advocating for families with Fabry and other rare diseases.

Useful links:

- Genomics Education Programme:
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- Loretta's Fabry blog:
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-Cambridge Rare Disease Network:
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- Genetic Alliance UK (with access to SWAN and Rare Disease UK):
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- Beacon rare disease patient support charity:
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- Unique rare disease patient support charity:
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- Medics4RareDisease:
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