Résultats pour "Rara" dans Parentalité

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.

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...

How would you like to be given a new identity to live by and then removed from your sisters and brothers—never to be legally permitted to contact them again—even upon your deathbed? This is just one of many examples of red tape adoptees are forced to contend with. This book reveals the making of the current child welfare system. The pioneers who built and profited from the industry continue to deny adoptees access to documents that could lead them back to their families. This book protects you against adoption profiteers and traffickers who profess God is on their side.

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, ...

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.

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

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.

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 ...