jueves, 17 de mayo de 2018

Super Powers and Keynote Inspiration at the 2018 Summit

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When her daughter Evie was born with a rare condition, award-winning photographer Rachel Callander used the power of language to see her potential, her abilities, and her beauty -- to focus on Evie’s “super powers.”
This was a powerful shift for her family and ultimately resulted in her life-affirming work, the Super Power Baby Project. Since losing her daughter Evie, Rachel has traveled throughout New Zealand meeting ordinary families made extraordinary through their children. As a result, her photographic art book features stunning photos of children born with rare conditions and offers a fresh perspective and a strong message: rare diseases bring challenges and grief but also much to be celebrated.
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Rachel is a captivating TEDx presenter, speaker, trainer and artist who travels the world speaking about the need to communicate using open-hearted language, especially at diagnosis. She teaches health professionals that the first words used at diagnosis critically shape how a parent perceives the future of their child and family.

We’re so grateful to have Rachel as a keynote speaker at the RARE Patient Advocacy Summit in Irvine, California on October 3-4th . Don’t miss the chance to be inspired – register today.

With Hope,
Global Genes

PS – Now is the time to save! Early bird pricing ends on May 31st.

 

 
 
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Register Today
Nominate your RARE Champion of Hope by May 31st. All awardees will be honored and recognized during the Summit at the RARE Champion of Hope Awards celebration
 
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Rooms at the host hotel, Hotel Irvine, will fill fast.
Don't miss out! Reserve your stay on location for the RARE Patient Advocacy Summit soon
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Only 10 exhibitor spaces remain! Come show off what your organization has to offer to 800+ Summit attendees. Register to be an exhibitor now!



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Global Genes is a leading rare disease patient advocacy organization whose purpose is to connect, empower, and inspire the rare disease community.
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