Showing results for "Rara" in Parenting & Families

The Rare Remix is a podcast for families navigating rare disease, disability, caregiving, accessibility, developmental differences, and life after a diagnosis changes the rhythm of everything.Hosted by Bryan and Lindsey, The Rare Remix features real conversations with parents, caregivers, advocates, experts, and anyone on a remixed journey. Together, we explore the everyday realities that families quietly learn to navigate, and discuss potential solutions based on first-hand experiences.This may not be the life you imagined. It’s a remix.

In a world that often defines success by traditional standards, "Sigma Females: The Rare Gems of Modern Success" highlights a special group of women who break the mold. This engaging book explores the lives of sigma females—independent, ambitious, and committed to their own paths.

A New York Times Book Review Editors' Choice Kate Bowler's The Everything Happens Book Club Pick! Award-winning writer Heather Lanier's memoir about raising a child with a rare syndrome, defying the tyranny of normal, and embracing parenthood as a spiritual practice that breaks us open in the...

Dobro došli na podcast! Ovo je naše: “Zašto Rare & Share?”: Tokom lečenja sina od retke bolesti, a posebno nakon izlečenja imali smo prilike da upoznamo sjajne ljude i čujemo vrlo inspirativne priče. Ceo jedan svet sa svojim temama. Ovde ćemo pričati sa onima koji su pokretali lavine događaja, menjali okvire, pomerali granice do tada poznatog. Želimo da razgovaramo o temama koje su važne onima koji se suočavaju sa retkim izazovima kao što su pravni i zakonski okviri, aspekat psihološke podrške, medicinska dostignuća i nove studije. Planiramo razgovarati sa ekspertima, ...

This is the Roadmap to Rare. Hosted by OCNDS parent Eric Finn, this podcast explores the reality of the rare-disease journey—sharing hope through real stories, real challenges, and research. This is our rare disease roadmap.Every rare disease journey is different, but no family should have to navigate it alone.On Roadmap to Rare, Eric sits down with parents, advocates, clinicians, researchers, and leaders in the rare disease community to talk about what the path really looks like—from diagnosis to advocacy, research breakthroughs, and everything in between.Together, these conversations ...

Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown. They were alone. They were scared. And then they went into action. And now ...

Hi, Welcome to the Strong and Rare parenting podcast. My name is Victoria, and I am a special needs momma of two fun loving boys. In this podcast, we will speak about all things Autism, ADHD, and Rare Diseases. This podcast will bring awareness, acceptance, and knowledge on all things we want to learn as parents raising children with special and medical needs. When you join me, I hope that you will walk away with hope and be empowered to be a driver of change for our community. Support this podcast: https://podcasters.spotify.com/pod/show/strongandrareparenting/support

Welcome to KCNA2 & Rare Epilepsy Podcast, a podcast created for the people living this journey and the people working to understand it. Each episode, hosted by Dr. Nancy Musarra, invites listeners into honest, generous, and sometimes vulnerable conversations with parents, researchers, clinicians, and board members to discuss the daily experiences of living with KCNA2, seizures, and other rare forms of epilepsy. You’ll hear stories, questions, and hopes from people who understand and are living with this disease. Our mission is to raise awareness, build connections and foster hope. This isn...

Parenting tools and life hacks for raising a child with a rare diagnosis. Let’s get to the meat of it!

Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, founder of Rare Mamas, author of the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, and a rare mom herself, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered. We rise stronger when we rise together—let's rise!

Join us on a deeply moving journey as we delve into the remarkable story of a mother's unwavering love for her son, who battles not one, but two rare diseases. Through candid conversations and heartfelt moments, listeners will gain insight into the challenges, triumphs, and resilience of a family navigating the complexities of rare medical conditions. From the initial shock of diagnosis to the daily realities of caregiving, this podcast explores the profound bond between a mother and her child, demonstrating the power of love and determination in the face of adversity. Tune in to be inspired ...

This new audiobook is third in a series of inspirational stories about fathers raising children with special needs. Rare Disease Stories from the SFN Dad to Dad Podcasts is a compilation of 12 stories told from the perspectives of fathers raising children with rare diseases. Each of the 12 chapters includes a heartfelt story by a father who has also agreed to serve as a Special Fathers Network (SFN) Mentor Father.

A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.

Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

The personally harrowing and medically enthralling story of a family's struggle to save a child from a deadly immune deficiency. A journey through the deepest valleys and highest peaks of parenting. When a two-month-old baby falls ill, his apparently ordinary symptoms turn out to signal a rare...

Are you raising a child with a Rare Disease, Special Need, or an Invisible Disease? Are you frustrated because you don’t have help and people just don’t understand your life? Do you feel like doctor’s appointments, daily medicine, and hospital bills are consuming your life? Do you want to have hope and live in freedom and not fear of what’s to come? In the Resilient Moms podcast, you will find a community for moms who will guide you in this beautiful journey of raising your warrior. You will feel encouraged, supported, and you will not feel alone in this journey. I will provide ...

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 ...