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
Two illustrated health professionals in conversation

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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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
An illustrated group of people, featureless and in multiple bright colours.

Stories of rare disease: Zainab

This third article in our series for Rare Disease Day 2023 tells the story of Zainab, who was diagnosed with a non-genomic rare condition at the age of 15
An illustrated group of people, featureless and in multiple bright colours.

Stories of rare disease: Melanie and Saskia

In the second article in our series, we share the story of Melanie’s long journey to finding a genomic diagnosis for her daughter Saskia
An illustrated group of people, featureless and in multiple bright colours.

Stories of rare disease: Aisha

To kick off our blog series for Rare Disease Day 2023, we share Aisha’s story of living with Morquio syndrome and look at the impact that healthcare workers can have on a patient’s journey
A large illustrated group of featureless people in bright colours.

Stories of rare disease: Introducing our new blog series

In honour of Rare Disease Day 2023, this week we’ll be sharing patients’ stories of living with rare disease and the role genomics has played in their journeys

News articles

An illustrated image of 10 people walking along paths and looking at different features along the way

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
Illustrated health professionals all looking for something

The #GenomicsConversation 2023 is coming

Is genomics hidden for you? Join us in June as we uncover the many ways genomics is shaping patient care

Events

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
A starlit sky at night with a DNA double helix looming

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.