More than 900 rare disease community members came together at the 2019 RARE Patient Advocacy Summit and left with actionable items to continue their advocacy work and an overwhelming feeling of community.

There is no other Summit that allows this type of interaction among so many stakeholders in rare diseases. There is not any other conference room out there that you could walk into and immediately feel heard, validated, and accepted.  The power in that alone is sustaining as we fight these rare diseases. – Lindsey Bergstrom, Rare Disease Advocate


Susannah Cahalan captivated us during her opening address.

“The work here never ends. That’s why it’s so important for all of you to advocate for yourself and others.” – Susannah Cahalan, Author and 2019 RARE Patient Advocacy Summit Keynote

David Fajgenbaum

David Fajgenbaum reminded us of the importance of collaboration.

“We need to work together within and across rare disease.” – David Fajgenbaum, Co-founder, Castleman Disease Collaborative Network and 2019 RARE Patient Advocacy Summit Speaker

Global Genes CEO, Kimberly Haugstad, shared words we can all relate to.

“What happens with rare is you fall in love beyond your child.” – Kimberly Haugstad, CEO, Global Genes

We ended the week by celebrating the 2019 RARE Champion of Hope awardees.

“Even though we’re just kids, don’t underestimate us. We are adorably great salespeople and we can make a difference.” – Dana Perella, 2019 RARE Champion of Hope

We’re Tackling Rare Disease

Rob Long, Executive Director, Uplifting Athletes

We’re teaming up with Uplifting Athletes for We Tackle Rare, a campaign to transform rare disease research. During the Summit welcome reception, Uplifting Athletes executive director Rob Long shared his hope for the campaign and his excitement in seeing it come to life. Join us and help boost awareness for rare disease. Learn More

We’d like to thank the attendees, speakers, volunteers, sponsors, partners, and exhibitors for your optimism, hard work and collaboration in making this the largest Summit to date. Our common goals and commitment to rare disease advocacy will allow us to continue making change.

Save the date! The 2020 RARE Patient Advocacy Summit will take place September 21-23, 2020 in San Diego, California.