Random Rare disease Podcasts

Out of Patients is a no-BS podcast about making healthcare suck less for everyone. Join award-winning host Matthew Zachary each week as he and his guests sardonically deconstruct all the shenanigans in terms normal humans can understand, along with a healthy dose of 80s nostalgia and random pop culture references. So strap in, and let’s all make the system less horrible; because advocacy is the only thing that’s ever changed anything.

Categories: Business, Health & Fitness, Society & Culture

Tags: activism, advocacy, advocate, anxiety, Audio Research, authenticity, cancer, caregiver, caregiving, chronic disease, chronic illness, community, covid, covid-19, digital health, drug pricing, Education, elura nanos, empowerment, engagement, health, Healthcare, influence, influencer, influencers, inspirational, inspiring, jen horonjeff, leader, leadership, Matthew Zachary, mental-health, Motivation, Motivational, Obamacare, offscrip, offscrip media, offscript, out of patience, Out of Patients, patient advocacy, patient centricity, patient education, patient empowerment, patient engagement, patient experience, patient insights, patient outcomes, patient stories, Podcast, podcasting, rare disease, real world evidence, savvy coop, social media, storyteller, storytelling, stress, stupid cancer, support, Survivor, vaccinations, vaccines, vaxon, well being, wellness

As a mom of a son with Skraban-Deardorff Syndrome, a WDR26-related intellectual disability, 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. I started this podcast 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. The podcast will feature 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. If you have any topics you would like to be discussed on the show, or if you would like to be a guest, please reach out to me at SmilesIncludedPodcast@gmail.com.

Categories: Kids & Family, Society & Culture

Tags: Epilepsy, Gene Mutation, Global Development Delay, Intellectual Disability, rare, rare disease, Skraban-Deardoff, WDR26