A rare diagnosis changes everything. You weren’t given a playbook on how to cope, how to take that next step, and you certainly weren’t handed a blueprint on how to build an advocacy organization or successfully bring a therapy to market. The good news is that rare disease advocates are some of the most inspiring, innovative activists on the planet, and Global Genes works to bring the community together to share best practices, create important introductions, and help catalyze powerful collaborations.
This is why Global Genes hosts the RARE Patient Advocacy Summit annually in Huntington Beach, California! The goal of the RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades.
2015 Summit Recap
Thank you to our generous Sponsors!
A Special Thank You To Our Partners!
Click here to download the 2014 Summit Agenda Click here to watch the 2014 Summit