Members of our MTM-CNM Family Connection Team recently attended the 2016 RARE Patient Advocacy Summit, hosted by Global Genes, September 20th & 21st in Huntington Beach, CA. With the beautiful backdrop of palm trees and the Pacific Ocean and in an atmosphere of innovation, energy, and alliance, patient advocates from the greater RARE disease community came together to learn from each other and from the scientists, researchers, philanthropists, artists, and others working hard to support and spread awareness on behalf of our communities.
One of the primary takeaways from this conference was that although each individual rare disease community is small, there are over 7,000 identified rare diseases with millions being affected. That means almost everyone, whether aware of it or not, knows someone RARE. Sadly, only 5% of these diseases currently have an FDA-approved treatment. However, this is where the cumulative power of RARE can make a difference, and Global Genes has really stepped up to the plate in providing support and learning opportunities for everyone at every stage by leveraging the strengths of each community's advocates.
During breakout sessions, RARE advocates who had succeeded in particular areas, such as community building, establishing advisory boards, fundraising, soliciting volunteers, utilizing social media to spread awareness, coordinating longitudinal studies, and pushing forward on the path of clinical trials, eagerly shared what had worked and what had not, often opening up the floor for feedback and participation. The roles of teacher and learner were fluid and dynamic as advocates spoke to their strengths and then sought mentorship in areas needing to grow. So speakers in one round of breakouts would be audience participants in the next round.
For us, it was valuable to glean knowledge and insights from other communities that are further along in clinical trials, and we were happy to share our expertise with other rare disease groups that are just getting off the ground or planning their first family conference. The conference presentations were informational, the spirit of collaboration palpable, and the universal commitment to work until all rare diseases are curable, undeniable! Galvanized by this positive, exhilarating experience, we came away more committed than ever to continue in our mission to connect MTM & CNM families to essential resources, active research, and life-enhancing relationships!
Myo, our MTM-CNM Traveling Turtle, also made the trip and made his rounds at the summit, meeting patients, family members, researchers, pharma industry and government agency leaders. We had an opportunity to share with other patient groups how Myo travels around the world with the goal of connecting our community and spreading awareness of MTM & CNM. Myo was happy to meet some new friends and also did some advocacy work as well, supporting the #CURESNOW campaign through social media.
MTM-CNM Family Connection's Blog
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