Genetic Alliance UK’s partnership with LifeArc
Date:
Our role in The LifeArc Translational Centres for Rare Disease
News and stories
All of the latest news and updates from Genetic Alliance UK can be found below. This includes the release of our latest reports and findings, as well as pieces that our member organisations have requested that we share.
We also share stories, images and experiences from those living with genetic, rare and undiagnosed conditions. Individuals affected by these conditions are at the heart of everything that we do and we want to champion these communities by amplifying their voices, individually and collectively.
If you’d like to have your story included on our website then get in touch.
Celebrating inclusive research: Patient and Public Involvement and Engagement (PPIE) Award 2025 for Early Career Researchers
Date:
Celebrating Inclusive Research: Patient and Public Involvement and Engagement (PPIE) Award 2025 for Early Career Researchers
Our Rare Story – FoxP2
Date:
Receiving a diagnosis can help bring clarity. In our recent blog we hear about a daughter who has been diagnosed with FOXP2 related speech and language disorder. We learn about the challenges that comes with this rare condition, and about the advancements in research and incredible organisations that are around to support people with this conditions.
National conversation to shape NHS 10 Year Plan
Date:
Launch of national conversation to shape the Government’s 10 Year Health Plan Statement from Mark Flannagan, Chief Executive of Genetic Alliance UK
New award for early career researchers working with the rare condition community
Date:
If you know of an early career researcher who involves your community effectively in their research, let them know about this new award.
Challenges and Innovations in Rare Disease Clinical Research
Date:
For Rare Disease Day 2024, Rebecca Starkie, Senior Global Patient Engagement Director, Advanced Clinical, shares some patient insights and talks about the challenges and innovations in clinical research.