Connective Tissue
Coalition
Empowering Progress, Inspiring Hope
MISSION
The Connective Tissue Coalition (CTC) drives progress for individuals and families affected by Ehlers-Danlos, Marfan, and Loeys-Dietz Syndromes. We fund direct, vetted research through grants, raise essential awareness, and provide comprehensive resources and support. Our mission is focused on accelerating scientific discovery to achieve accurate diagnosis, effective new treatments, and ultimately, a cure.​
VISION
We envision a world where connective tissue patients have accurate diagnosis, effective treatments, and a brighter future free from these debilitating conditions.
VALUES
Knowledge - Compassion - Hope
Key research and a higher level of awareness and support bring hope to the future.
- Jon Rodis
Bid 4 research Silent Auction
We are hosting an online silent auction to benefit CTC
Friday 05/15/2026 at noon EST - Friday 05/22/2026 at 9pm EST
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
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.
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