Guiding Caregivers: Palliative Care & Beyond with @Courageous Parents Network | The Rare Advocates скачать в хорошем качестве

Guiding Caregivers: Palliative Care & Beyond with @Courageous Parents Network | The Rare Advocates

🌟 Join us for a thought-provoking conversation on The Rare Advocates Podcast, where I sit down with Jennifer Siedman, Director of Community Engagement at @Courageous Parents Network (CPN) and NeuroJourney.org. In this episode, we delve into the invaluable resources provided by CPN and NeuroJourney, empowering caregivers to navigate the complexities of caring for children with severe neurological impairments. 🤝 Discover how Courageous Parents Network, a nonprofit organization, offers curated digital resources and supportive programming to guide caregivers through the illness journey with compassion and community. Explore NeuroJourney.org, an educational platform that addresses the multifaceted medical, social, and emotional needs of families and clinicians supporting children with severe neurological impairments. 💡 Gain insights into topics such as anticipatory grief and palliative care as we explore the interconnected experiences of caregivers on this challenging journey. Whether you're a caregiver seeking support or a healthcare professional striving to enhance patient care, this episode offers invaluable perspectives and resources. 🔗 Listen now to gain a deeper understanding of Courageous Parents Network and NeuroJourney, and how they are shaping the landscape of caregiver support and pediatric care: The Rare Advocates Podcast - Jennifer Siedman on CPN and NeuroJourney #PalliativeCare #AnticipatoryGrief #CaregiverSupport #PediatricCare #NeurologicalImpairments #CourageousParentNetwork #NeuroJourney #RareAdvocates #HealthcarePodcast 🌈 💚The Aicardi Goutieres Syndrome Advocacy Association works to improve the lives of individuals and families living with Aicardi-Goutieres Syndrome (AGS). 💙AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with and yet to be diagnosed with Aicardi-Goutières Syndrome using our learned experience and honoring those before us. 💚AGSAA is a 501c nonprofit foundation 💙Our Mission: Rescuing Potential. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families. 💚 Socials: @agsadvocacy on all socials 💙 Podcast: https://anchor.fm/agsadvocacy/ #aicardigoutieressyndrome #disabilitiesawareness #raredisease 🎧 Audible: https://music.amazon.com/podcasts/ce6... 🎧 Spotify: https://open.spotify.com/show/3S2K2zm... 🎧 Apple Podcast: https://podcasts.apple.com/us/podcast... 🎧 Google Podcast: https://podcasts.google.com/feed/aHR0... 🎧YouTube:    / @agsadvocacy   #aicardigoutieres #rarediseaseday #rarediseases #leukodystrophy #symptomsofleukodystrophy #dystonia