Parents share their unique experiences of raising kids with special needs, disabilities, developmental delays, diseases and other challenges.
Categories: Kids & Family
Tags: autism, Children, chromosomedisorder, death, developmentaldelays, diagnosis, disabilities, downsyndrome, earlyintervention, Kids, parenting, raredisease, specialeducation, SpecialNeeds
HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has HCU or has been affected by HCU. Topics to be discussed on the show include patient stories, research updates, recipes, and interviews with experts in the field of homocystinuria. Whether you or someone you know were just diagnosed or have been a patient for years, we hope you find this podcast helpful!
Categories: Arts, Health & Fitness
Tags: hcu, hcunetworkamerica, hcunetworkaustralia, Homocystinuria, metabolicdisorder, raredisease
The On-Air Advocate podcast provides education, advocacy and support for special needs parents, caregivers, those with disabilities and complex medical conditions.
Categories: Health & Fitness, Kids & Family
Tags: advocacy, Caregivers, chronicillness, complexmedicalneeds, differentabilities, disability, medicalconditions, patientadvocacy, raredisease, SpecialNeeds, specialneedsadvocacy, SpecialNeedsParenting
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 actionable tips that will help you develop a new perspective and grow in your faith. My mission is to help you overcome fear and discover faith in this new journey. Hello Momma, I’m April. A wife, Mom, believer, and Rare Disease advocate. My son was born with a Rare Disease, and I thought I could never live a happy and normal life. I always felt frustrated throughout this journey. We endured a lot of setbacks, and ultimately, I thought our life would consist of constant surgeries, long hospital stays, and continuous doctor’s appointments. My mindset was becoming so negative, and I felt so alone in this journey. But I am so glad time and faith have helped me discover my purpose and embrace this beautiful journey. I finally realized what helped me thrive during all the setbacks in this journey and I’m ready to share my experience. If you’re ready to be equipped and encouraged in a community for moms raising rare disease warriors, then you’re listening to the right podcast. You will realize that you are built for this journey, and you can live a happy and NEW normal life. So, grab those medical supplies and get ready to check-in for your weekly dose of encouragement with other Resilient Moms like you. Connect- info@youareresilientmom.com Community -https://bit.ly/3z77IAG Free Important Facts Slide show Template -https://bit.ly/3fAKSJN
Categories: Education, Kids & Family
Tags: advocate, entrepreneur, faith, invisibledisease, motivationcoach, PodcastCoach, rarecondition, raredisease
As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time – I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.
Categories: Kids & Family, Society & Culture
Tags: advocate, caregiver, disability, genetherapy, genetics, inclusion, parenting, raredisease, rarediseasepodcast, raredisorder, SpecialNeeds, specialneedspodcast, wholeexomesequencing
A podcast focusing on biotechnology and its promise to transform the lives of people living around the world with rare and serious diseases. During each episode, we explore a topic related to biotechnology and rare disease by interviewing doctors, scientists, patients, family members of people with rare or serious diseases, and or other experts in biotechnology. The show both highlights the exciting world of biotechnology and the impact it is having on patients while also offering advice and insights for people who have rare or serious diseases as well as their family members or caregivers.
Categories: Health & Fitness
Tags: Alpha1, Biotech, biotechnology, biotherapies, csl, cslbehring, disease, Healthcare, hemophilia, Medicine, pi, primaryimmunedeficiency, raredisease, vonwillebranddisease
I’m Aware That I’m Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global
Categories: Health & Fitness
Tags: advocacy, asthma, Awareness, Breathlessness, caregiver, clinicaltrials, CTEPH, earlydiagnosis, Education, lungdisease, medical, pah, pediatric, PH, phaware, pulmonary, pulmonaryhypertension, raredisease, research, Transplant, treatment