The Rare Disease Gazette

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The journal Science (American Association for the Advancement of Science) in collaboration with Fondation Ipsen delivers international science webinars for the general public. In 2023, these webinars focused on advocacy in rare diseases. The Rare Disease Gazette is a magazine that broadcasts these discussions. In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Taking care of caregivers.

There are more than 10 million caregivers across the UK. About 12% of the population of Northern Ireland contributes more than 2.4 million hours of unpaid work per week. And yet supporting caregivers is so neglected.