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Connective Tissue Coalition (CTC) empowers individuals and families affected by Ehlers-Danlos Syndrome (EDS), Marfan Syndrome, and Loeys-Dietz Syndrome (LDS) through advocacy, research, and support.

ABOUT US

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We aim to drive research, raise awareness, and provide resources for those affected by Ehlers-Danlos Syndrome(s), Marfan Syndrome, and Loeys-Dietz Syndrome through governmental and official funding sources. We strive to initiate medical research while collaborating with patients, medical, educational, and research communities to improve the quality of life of those affected by these connective tissue disorders.
 
We are committed to being a transparent and reliable source of up-to-date information and support for individuals and families living with these conditions and hope for those living with undiagnosed connective tissue disease to be correctly diagnosed. 

We will advance our purpose by creating sustainable progress in both progressive research and powerful initiatives at a pace that should be the norm in healthcare, not the exception. And sustainability will be the natural result of our core commitment that 100% of our funding will go toward these projects.

We will attain our objective by focusing on our cohesion. Because when we combine the creativity and expertise of our most esteemed scientists, medical professionals, patients, allies, and families, we will make those long-necessary breakthroughs and achieve what was once unthinkable: a cure.

 

At CTC we envision a world where individuals with connective tissue disorders are understood, supported, and those living with these conditions are empowered to live their best lives. We believe that by bringing people together, we can create a community that is informed, compassionate, and inclusive.
 
With your help, we can continue to make strides in research and awareness and provide support for those in need. We invite you to join us in our mission to improve the lives of individuals with connective tissue disorders. Volunteer or donate today!

About Us

OUR TEAM

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The Connective Tissue Coalition is a community of professionals and individuals who are committed to raising awareness and advocating for those living with connective tissue disorders. Our team is made up of professional advocates and individuals who have been directly impacted by connective tissue disorders. Together, we work to provide resources and education about connective tissue disorders and to advocate for improved diagnosis, treatment, and support.

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 Connective Tissue Disorders by making education, advocacy, and empowerment 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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Key research and a higher level of awareness and support bring hope to the future. 

- Jon Rodis
Contact Us

CONTACT US

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Our Address

45 Pearl Ave #3

Winthrop, MA 02152

info@connectivetissuecoalition.org

Opening Hours

Monday – Friday  9AM – 5PM EST

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