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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

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

Support Group Meeting

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CONTACT US

Our Address

45 Pearl Ave #3

Winthrop, MA 02152

info@connectivetissuecoalition.org

+1 (978) 361-4112

Opening Hours

Monday – Friday 11AM – 5PM EST

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