I am humbled and honored to have the opportunity to speak and attend my first Global Genes RARE Patient Advocacy Summit in Huntington Beach this week! I have narrowed the breakout sessions I want to attend to about 18 (yikes!) Global Genes is a phenomenal rare disease advocacy group, and I'm so incredibly grateful that they extended this opportunity to be immersed in teaming, activism, drug development, and scientific innovation to me, Last year, almost 600 attendees representing over 170 rare diseases came together, and there will be even more this year!
The 2017 RARE Patient Advocacy Summit brings rare advocates from across the globe together to Connect, Collaborate, and Activate. This educational conference creates a space for members of the rare disease community to share best practices, create important introductions, and help catalyze powerful collaborations. Attendees share their experience, knowledge, and expertise as conference presenters and or participants
I will be presenting in a workshop on the topic of working with Physical and Occupational Therapists. We have had such an incredible team since Curren was 9 months old to draw knowledge from, and in just over 3 years we have had therapy in the home, clinical, and school settings. We have also navigated coverage of services through Early Intervention, Medicaid/CHIP, the Public School District, and Private Insurance. It has been a journey, and the commitment from Curren and our team is changing his life. I can't wait to share what we have learned on this path so far, and will share my summit experience when I return!
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.