PODCAST
This podcast features guests and experts across the rare disease spectrum that highlight how to bring out the best in our rare kids and showcase that we are not alone, but part of a great community of people supporting our rare children.
Did you miss a crucial detail during the audio interview? Wishing you could quickly refer back to a specific point? We've got you covered! In our commitment to providing inclusive communication access, we've transcribed every episode. Now, you can effortlessly view, read, and even translate our content into your preferred language.
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Meet the host: Emily Beauclair
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"As a mom of a son with Skraban-Deardorff Syndrome, I started listening to podcasts as a form of therapy and to get advice for how to navigate through the emotions and questions that come with having a child with a rare disease diagnosis. The podcast was created for those impacted by Skraban-Deardorff, and other rare diseases, as a way to share stories, ask and answer questions, get advice, and have a platform where we can work to understand together what the diagnosis means and how we can support each other. If you have any topics you would like to be discussed, or if you would like to be a guest, please reach out to me at podcast@skdeas.org."
