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.
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.



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
Book Today
Rooms at the host hotel, Hotel Irvine, will fill fast.
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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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