#26 Álvaro Villanueva | Las enfermedades raras, tratamientos y Fundación AVA | Concienciarnos

What is it like to face a rare disease? And for the family? In Spain, do we have the resources to help families or patients? Álvaro Villanueva, founder of the Ava Foundation (@fundacion-ava), explained to us how he and his family came to understand Alvarete's illness. He also highlighted the lack of real solutions for the daily lives of people like Alvarete in terms of sports, treatments, support at every stage, and so on. Discover how raising awareness and sharing these realities helps integrate them into society. Chapters 00:00 Introduction 0:01:00 Severe neurological disorder: How did this new reality change your life? 0:04:00 After learning he had this rare disease, what have you learned from Alvarete? 0:05:00 The blog in El País, ‘Letters to my son’: How does this type of visibility help? 0:12:00 The value and importance of the lives of people with rare diseases or disabilities 0:13:40 The importance of acceptance: what is it like to live with this on a daily basis? 0:18:00 The Ava Foundation: lack of resources in the daily lives of people with rare diseases 0:23:00 Objectives of the Ava Foundation: raising awareness, direct action, learning 0:25:00 Sport: who is this leisure activity for? 0:30:00 Residence/occupational center and the activities they have achieved 0:32:30 Could this be extrapolated to families beyond Madrid? 0:37:00 The difficulties in getting people to understand why it's necessary to invest in these realities 0:38:00 Quick Questions 📌Project: Founder of AVA Fighters 📚 Books: https://www.penguinlibros.com/es/9911... 💻Website: https://fundava.org/ 📲Social Media: https://x.com/alvaro_villanu 📍 Special thanks to Petit Palace Alcalá for this space where we recorded #referentes 📅 Every Friday on our #youtubechannel a new #interview on #mundocero 🎙 If this is your first time visiting our channel, we'll leave you A video to learn about all our actions here:    • Presentación de Mundo Cero - Ibon Cormenza...   🎞️To learn more from the experts we interviewed for #MundoCero, here are the interviews we're conducting:    • REFERENTES   ⏯️And if you want to hear the testimonies of anonymous or silenced people through the voices of the protagonists of #Hatesongs, our first film, click here:    • ALTAVOCES   🎥 About #MundoCero 🎥 Mundo Cero is an audiovisual production company Committed to creating content to educate, raise awareness, and generate social transformation by addressing global issues that affect the planet. ✅ You can follow all our news on social media here ⬇️   / mundocerocrea     / mundo-cero-crea     / mundocerocrea