Connective Tissue
Coalition
Empowering Progress; Inspiring Hope
MISSION
The Connective Tissue Coalition (CTC) drives research, raises awareness, and provides resources for individuals affected by Ehlers-Danlos, Marfan, and Loeys-Dietz Syndromes. With a research grant program and providing seed funding to qualified researchers, CTC seeks to initiate and support relevant, vetted research projects in these critical areas. Our programs and initiatives prioritize advancing research and accurate diagnosis, and new treatments. Combining the expertise of our most esteemed scientists, medical professionals, advocates, patients, and families will make those long-necessary breakthroughs and achieve what was once unthinkable: a cure.
We invite you to volunteer and join us in our mission.
VISION
A world where connective tissue patients have accurate diagnosis and empowered care.
VALUES
Honesty - Compassion - Accountability
Key research and a higher level of awareness and support bring hope to the future.
- Jon Rodis
ABOUT US
The Connective Tissue Coalition is a community of professionals and individuals committed to raising awareness and advocating for those living with connective tissue syndromes. Our team comprises professional advocates and individuals directly impacted by Ehlers-Danlos Syndrome, Marfan Syndrome, or Loetz-Dietz Syndrome. Together, we provide resources and education about connective tissue disorders and advocate for improved diagnosis times, treatment options, and research.
After years of combined experience in patient advocacy, medical outreach, and public awareness, our members have come together under the leadership of Jon Rodis and our multi-talented board to realize a long-held dream: strength through unity as the Connective Tissue Coalition. We have created a Coalition that is gathered to fulfill a crucial purpose: to elevate the quality of life of all people with these Connective Tissue Syndromes by making education, advocacy, and research our singular goal.
1:500
Your odds of inheriting
hEDS
1:100000
Your odds of inheriting
vEDS
1:10000
Your odds of inherting
Loeys-Dietz Syndrome
​
1:5000
Your odds of inherting
Marfan Syndrome
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CONTACT US
Our Address
Opening Hours
Monday – Friday 11AM – 5PM EST