About Us
The Connective Tissue Coalition is a 501(c)(3) non-profit committed to advancing research and support for individuals affected by connective tissue disorders. Our focus encompasses Ehlers-Danlos Syndromes, Marfan Syndrome, Loeys-Dietz Syndrome, and related conditions. We work tirelessly to raise awareness, fund essential research, and foster community. Our founder, Jonathan Rodis, has dedicated his life to advocating for patients, promoting research, and building community around those affected by these connective tissue conditions.
Our Mission
Our mission is focused on accelerating scientific discovery to achieve accurate diagnosis, effective new treatments, and ultimately, a cure for Ehlers-Danlos, Marfan, and Loeys-Dietz Syndromes.​
Our Vision
We envision a world where individuals with connective tissue disorders receive timely diagnoses, effective treatments, and a supportive community that fosters resilience and hope.
Our Founder
Jonathan Rodis has dedicated his life to advocating for patients, promoting research, and building community around those affected by Marfan, Ehlers-Danlos, Loeys-Dietz and many other related connective tissue conditions. After receiving his B.S. in Management at Northeastern University, Jon achieved his M.B.A. in Executive Management at Suffolk University and gained over 20 years of experience in business management in consulting and senior management positions. He worked as a Business Development Manager/Consultant for MyKroWaters and then as an independent corporate consultant, until becoming permanently disabled in the Fall of 2001. However, this “ending” flourished as Jon’s beginning.
We believe that everyone living with connective tissue disorders deserves a voice, access to resources, and effective treatments.
Our Board
We are fortunate to have a team of national advocates, filmmakers, and medical professionals with lived experience directing our organization.