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Rare diseases: Making the unseen seen

Rare diseases: Making the unseen seen

Contrary to the isolation of lockdown, a vibrant and vital new collaboration emerged. Action for Rare Disease Empowerment (ARDEnt) is a cross-sector coalition of 30 UK-based experts involved in rare diseases. Concerned at the impact of COVID-19 on those affected by...

The future of genomic medicine: can it fulfil its promises?

The future of genomic medicine: can it fulfil its promises?

Last week geneticist Dr Charles Steward shared with us his experiences of searching for a genetic cause for his children’s rare neurological diseases. Here he gives us a deeper look at how genomic medicine is evolving and the barriers that are preventing it from reaching its full potential.

An impact study on the rare disease community: a call to action

An impact study on the rare disease community: a call to action

Jo Balfour, one of the founding members and current Operations Manager at Cambridge Rare Disease Network (CRDN), has collaborated with Medics4RareDiseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.” The report aims to highlight the risks, gaps and opportunities presented by COVID-19 for the rare disease community.

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