Dup15q Alliance is proud to partner on several projects with the Child Neurology Foundation moving the entire community forward to achieve our goals.
Community of Practice
CNF’s Community of Practice gathering is a way to provide a safe forum for people in our sector to support one anotherCNF will hold a space for leaders of our child neurology community to candidly discuss the issues and challenges they experience every day. By sharing what we know and feel, we can build connections and resilience, work together to solve problems, and reinforce that none of us are alone in this crisis.
THRIVE is a collaborative initiative to engage, embrace and drive change in the rare disease community. By acknowledging the need to communicate and lean on the strengths of our allies, brighter futures will come. As members of the rare disease community, we recognize that together we can do more than when we act alone. We acknowledge that the rare community is a fine and delicate web of initiatives, actions, ideas and passion that aims to create a hopeful future for everyone affected by rare disease. We know that the brightest future will come when we rise as a united community. Most importantly, we understand that when we conduct ourselves in a manner that is collaborative and empowers others, the rare community truly THRIVEs!
Collaborative Peer Support Work Group
Collaborative Peer Support Work Group is a multidisciplinary panel engaged in bringing these insights and solutions to light for the entire community! CNF was awarded a Patient Centered Outcomes Research Institute (PCORI) grant to convene a multi-stakeholder Work Group aimed at assessing the strengths and gaps of peer support in the larger child neurology community. Dubbed the Collaborative Peer Support Work Group, Dup15q Alliance is proud to partner together with 10 other group members to lend insights and identify solutions for the entire community!