2015 RARE Patient Advocacy Summit/RARE Tribute to Champions of Hope: Share your Story!

It was a marathon few days of rare disease networking, education and connection during our annual RARE Patient Advocacy Summit and Tribute to Champions of Hope Gala this year. Our speakers made powerful presentations on everything from caregiving to fundraising. Patients, parents, advocates and so many more flew in to the Huntington Beach location to meet, listen and learn.

We’ve been honored and overwhelmed to hear back from some of you on what your personal experience was like. Here’s what some of our guests had to say:

“I was blown away. The variety and depth of information was incredible. Information overload, incredible. The event was transformative and life changing.” —Daniel Defabio, Advocate for Menkes Disease

Thank you so much for including the PFF in the Global Genes Summit. I met so many amazing people and will bring a wealth of new knowledge and thoughtful ideas back to my colleagues. The conference was amazing and the gala event was truly spectacular. Congratulations on your success and please stay in touch!

-Jeri Webb, Associate Vice President, External Relations at Pulmonary Fibrosis Foundation

Your Summit was first class all the way! The speakers were all extremely interesting and very inspiring. The
award winners made me cry during their speeches. My goal of attending the Summit was not only to listen, learn and connect, I wanted to meet David Glazer of Google Genomics.  Your Summit allowed for people to network and build relationships. I am now communicating directly with David via email. Thank you for connecting us! Thank you for inspiring me to take my foundation to the next level. – Gina Szanjnuk, Co-Founder and Executive Director of Rare and Undiagnosed Network (RUN)

Please share your Summit/Tribute story and pictures with us below!

Share Your Story