Organización destacada: Safe Harbor, un podcast para padres y familias de niños con discapacidades.
Para los padres y otros familiares de niños con discapacidad, no hay nada más reconfortante que la voz y la sabiduría de alguien que ha pasado por lo mismo, alguien que realmente entiende los altibajos de vivir junto a alguien con una enfermedad rara o un trastorno raro.
Por eso Theresa Bartolotta decidió ofrecer un podcast. Theresa es doctora y profesora de Patología del Habla y el Lenguaje. También es madre de un joven adulto con síndrome de Rett y coautora de las recientemente publicadas Directrices de Comunicación para el Síndrome de Rett. A través de su vida personal y su trabajo, se ha encontrado con cientos de familias, y un punto en común es que todas buscan historias y voces que validen sus experiencias.
The first episode of the Safe Harbor podcast launched in January 2022, and in it, Theresa shares her own story and inspiration behind starting the podcast. She explains, “With this podcast, I hope to create an inspired community where we share our stories, our joys, our challenges, and our possibilities.”
“This show enables parents to come together as a community to share, learn, and support each other on this complex path.”
Since then, the podcast episodes have tackled various topics including planning for the future, how to advocate for your child during an IEP meeting, travel tips, ways to connect with disability and rare disease communities, navigating cycles of grief and hope, and so much more. Theresa interviews parents and experts who offer insight and encouragement. As the podcast description says: “This show enables parents to come together as a community to share, learn, and support each other on this complex path.”
Recently, our Know Rare founders were featured guests on the Safe Harbor podcast. Theresa interviewed Nina and Jake Wachsman in Episode 12: “Connecting Individuals with Rare Disease to Clinical Trials.” In this episode, Nina and Jake discuss why they founded Know Rare, why it’s so important to lower the barriers for patients to find and enroll in clinical studies, and how building a community for rare diseases and sharing knowledge benefits everyone. They emphasize the common goal of empowering people to find better care for their rare diseases. Be sure to listen here.
Más información:
To listen to the Safe Harbor podcast, click here or search for “Safe Harbor” on your favorite podcast platform.
You can also join the Safe Harbor Facebook group by clicking here.
To search for clinical trials, try Know Rare’s Study Finder.
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Gina D. Wagner
Gina DeMillo Wagner es una escritora profesional afincada en Boulder, Colorado. Su trabajo ha aparecido en The New York Times, Washington Post, Self, Outside, Modern Loss, Experience Life y otras publicaciones. Actualmente está trabajando en una autobiografía. Puedes seguir su trabajo en Instagram @ginadwagner.