Words cannot begin to express our gratitude for the support, passion, and generosity of all of who attended our 4th Annual RARE Patient Advocacy Summit & RARE Tribute to Champions of Hope this past September in Huntington Beach, CA.
Friends, Patients, Advocates, Caregivers & Supporters,
It was a marathon few days of rare disease networking, education and congratulations during our annual RARE Patient Advocacy Summit and RARE Tribute to Champions of Hope this year. Our speakers made powerful presentations on everything from caregiving to fundraising. Patients, parents, and advocates alike traveled to the Huntington Beach to meet, listen, share and learn. We wanted to take this opportunity to convey our deepest appreciation to all of you for spending such an empowering few days with us!
The 4th Annual RARE Patient Advocacy Summit was host to nearly 400 in-person attendees, a number that was nearly tripled by those who attended the Summit via Livestream! Over 15 countries connected and shared best practices as well as over 120 rare disease communities met, mingled and learned at the Summit. As you experienced firsthand, we have a wealth of talent, experience, and education in our community. Hearing the challenges, successes and heartfelt stories from many of our attendees left our Global Genes team in awe of the strength of the RARE Community.
We want to hear from YOU!
We’ve received an incredible response from those of you who attended this year’s Summit/Tribute! We would love it if you would share your stories with our readers at The RARE Daily. Please share with us about how you came to join the rare community and how the Summit/Tribute impacted you! Submit your story, here.
The RARE Patient Advocacy Summit is only successful when we have your feedback!Our team works hard to make sure the Summit is a success; in order to make that happen, we need to hear from you on what is working, and what we can make more effective. This is YOUR Summit. Please help us by taking a moment to complete our survey, here.
RARE Tribute to Champions of Hope
The 4th annual RARE Tribute to Champions of Hope was host to over 800 attendees and was in part responsible for helping in raising 1.2 million dollars towards Global Genes’ educational programs and new RARE Patient Impact Grant.
Throughout the Tribute, we celebrated rare disease champions from around the globe who are proving that great things can be accomplished by dreaming, planning, taking action, and believing. The night will be remembered for its courageous honorees, touching acceptance speeches, and amazing performances by Cimorelli, Ben Lou, Kris Allen, Aleem, and Christina Grimmie! Watch the Tribute & its performances, here.
The RARE Patient Impact Grant is now open! With your support, we can offer more grants to foundations and support groups, securing funding for projects that will make a tangible difference in the RARE Community! If you would like to donate to help support this important program, we hope you’ll consider doing so, here.
The 4th annual RARE Tribute to Champions of Hope was host to over 800 attendees and was in part responsible for helping in raising 1.2 million dollars towards Global Genes’ educational programs and new RARE Patient Impact Grant.
Throughout the Tribute, we celebrated rare disease champions from around the globe who are proving that great things can be accomplished by dreaming, planning, taking action, and believing. The night will be remembered for its courageous honorees, touching acceptance speeches, and amazing performances by Cimorelli, Ben Lou, Kris Allen, Aleem, and Christina Grimmie! Watch the Tribute & its performances, here.
The RARE Patient Impact Grant is now open! With your support, we can offer more grants to foundations and support groups, securing funding for projects that will make a tangible difference in the RARE Community! If you would like to donate to help support this important program, we hope you’ll consider doing so, here.
Our collective impact is already making a difference, please know that this positive influence and growth would not be possible without the fight in the RARE Community and the support of our sponsors & donors! A very special thank you to the weekend’s platinum sponsors: Alexion, Genentech, Healthcare at Home, Shire, and Walgreens!
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