03/17/2026
Several of our team members met with advocates, legislators and community leaders this week in Phoenix, where Arizona became the first state in the nation to host a Rare Skeletal Conditions Advocacy Day at its State Capitol. It was a meaningful moment to listen, learn and stand alongside a community that continues to lead with resilience and purpose. Advocates were also recognized on the floor of the Arizona House of Representatives.
We had the opportunity to hear from community leaders Kristen DeAndrade and Tammy Bowers, whose firsthand perspectives and lived experiences helped shape important conversations throughout the day. BioMarin’s Michael Ash, who leads our skeletal conditions business unit and was born and raised in Arizona, also spoke, underscoring the importance of improving care for people living with rare conditions statewide, while also working toward global progress. Joan Koerber-Walker, who leads AZBio, spoke about Arizona’s growing bioscience ecosystem and the opportunity for Arizona to be a leader in access to innovations such as whole genome sequencing.
Discussions also focused on the importance of expanding access to genetic testing, including the opportunity to expand access to newborn genomic screening for rare conditions with FDA‑approved treatments.
We appreciate the chance to learn from the community and look forward to continuing to amplify these voices. Thank you to the Little Legs Big Heart Foundation, the Noonan Syndrome Foundation and AZBio for sponsoring this important opportunity to help advance progress for people living with rare genetic skeletal conditions in Arizona.
