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Institute of Genetics and Cancer

Institute of Genetics and Cancer

A blog for our community to write about their interests and to share their stories.

  1. Institute of Genetics and Cancer
  2. Tag: Rare Disease Day

Tag: Rare Disease Day

Image reference: Genomics England, Diverse Data initiative, accessed February 20th, 2026.

Barriers to breakthroughs – why ensuring equity in rare and genetic disease research should matter to us all

By Elllie Richards, PhD student All living things, from people and animals to trees and bacteria, have a genome: a complete manual written in the language of DNA. This encodes instructions for how to make proteins, the building blocks that make and control our bodies, controlling everything from cellular motility and survival all the way […]

25th February 2026 0

Myaware logo

A rare-disease charity raising awareness and support: Myaware – Fighting Myasthenia together

As researchers and academics, sometimes we can get a bit caught up in our world of experiments and data – we don’t think about the daily struggles of people living with the conditions we study. Rare diseases are categorised as conditions affecting fewer than 1 in 2000 people. They are individually infrequent, but collectively common, […]

25th February 2026 0

Head shots of two children

Spotlight on ATR-X syndrome for Rare Disease Day 2025

Image: Brothers Benjamin, seven, and Gabriel, three, both have ATR-X syndrome By Rebekah Tillotson, Chancellor’s Fellow at the Institute of Genetics and Cancer With Ben Harris and Jennifer Martinez-Harris, ATRX Research Alliance (a parent-led global group of families committed to accelerating research) ATR-X (Alpha-thalassemia X-linked intellectual disability) syndrome is a rare genetic disorder that affects […]

27th February 2025 0

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