Blog articles

From patient to advocate

Helen White tells us how her own diagnoses compelled her to carve a path in representing others

How hearing patient experiences levels up genomics training

Incorporating patient voices in genomics education can help healthcare professionals see the human impact of genomics. Here are some examples from our own work
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Experts through experience: Arti’s story

In today’s #GenomicsConversation blog post, we share Arti’s story of pursuing genomic testing and finding answers about her condition
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Experts through experience: Jo’s story

As part of this year’s #GenomicsConversation, patient advocate Jo shares her breast cancer journey, which began before the NHS Genomic Medicine Service was set up
Illustrated image of two health professionals in conversation

Experts through experience: Dave’s story

As part of this year’s #GenomicsConversation, we spoke to 100,000 Genomes Project participant Dave about his first-hand experiences of genomic testing in the NHS
illustrated image of two health professionals in conversation

Experts through experience: Becky’s story

Today, as part of our #GenomicsConversation week, we hear from Becky about her daughter’s complex condition, which remains undiagnosed even after genomic testing
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Stories of rare disease: Sara and Freya

In this fourth and final instalment of our rare disease blog series, we look at what happened when Sara received an unexpected diagnosis from her daughter Freya’s whole genome sequencing

News articles

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The #GenomicsConversation 2024 is coming!

Join us this June as we chart how genomics is becoming part of routine NHS care and meet the people who are making it happen

Events

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RAREsummit25

Cambridge Rare Disease Network (CamRARE) presents this summit to address the challenges faced by people affected by rare diseases

Our Voices, Our Stories: Lived Experiences of Genomic Testing

Central and South Genomics presents this webinar around the lived experiences of people who have been through genomic testing

RAREfest24

Returning between Friday 22–Saturday 23 November 2024, RAREfest24 by the Cambridge Rare Disease Network is a free event for everyone of all ages
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Galactic Genomes: Exploring the Universe of Rare Diseases

A day of talks from leading rare disease researchers, patients and organisations, and featuring a research poster presentations. Lunch and refreshments provided.