On Rare Innovators: Carmen Alonso and the Founding of ALPE - "The Love You Give, You Receive Back"

About this episode

The episode features Carmen Alonso discussing her journey and the impact of the ALPE Foundation on the rare disease community.

In the inaugural episode of On Rare: Innovators, a new sister series of On Rare from BridgeBio, hosts David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, introduce listeners to the changemakers reshaping the rare disease community through advocacy, compassion, and action. The series begins in Gijón, Spain with Carmen Alonso, founder and longtime leader of the ALPE Foundation, who has dedicated her life to improving care and building community for people and families living with achondroplasia. What began as Carmen’s personal journey as a mother seeking information and support grew into an international network that has transformed how achondroplasia and other skeletal dysplasia are understood and managed. Joined by her son Yago and longtime colleague Fani , Carmen reflects on the lessons of love and inclusion that have guided her work and the belief that “you can always do something.” Through Carmen’s story, On Rare: Innovators celebrates leaders whose ideas and determination drive change across science, advocacy, and community. Their work reminds us that innovation isn’t only found in laboratories or…

People in this episode

Hosts: David Rintell, Mandy Rohrig

Guest: Carmen Alonso

Topics covered

• rare disease
• advocacy
• community building
• patient support
• innovation
• skeletal dysplasia

Keywords

• achondroplasia
• patient advocacy
• community
• healthcare
• innovation
• support

Mentioned in this episode

Organizations: ALPE Foundation

Books & works: On Rare: Innovators

Places: Gijón, Spain

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• Another Year of Purpose and Progress: On Rare Looks Back at 2025 · January 9, 2026 · 37 min
• On Rare Innovators: Carmen Alonso y la fundación de ALPE - "El amor que das, lo recibes de vuelta" · January 8, 2026 · 48 min
• On Rare Innovators: Nasha Fitter is Redefining the Rare Disease Playbook – “Who says we can’t do this?” · December 10, 2025 · 44 min