Connective Tissue Coalition

06/16/2026

🫶Don't forget, you can also follow on Instagram to see more.

06/11/2026

🗣️ CALLING ALL ADVOCATES: We need your help to educate the medical community! If you or a loved one has fought for an Ehlers-Danlos or Connective Tissue Disorder (CTD) diagnosis, you know how critical clinician education is. Please SHARE this post to help us reach healthcare providers and students!

"Hidden in Plain Sight: Bias, Diagnosis, and Care in Ehlers-Danlos and CTD" is an online course offering 1.5 CME/CE credits for:
~Physicians
~Registered Nurses
~Nurse Practitioners
~Physician Assistants

Led by Michelle Nichols, PhD, RN, and Donna Sullivan (Co-Producer of Complicated), this training covers clinical presentation, co-occurring conditions, proper pain management, and overcoming the unconscious bias that delays patient care.'

Let's bridge the gap between patients and providers. Tap the share button, add this to your stories, and tag a healthcare professional or medical student below! 👇

🔗 Register here: https://www.pathwaystotrust.org/ctd1

06/10/2026

We are so grateful for researchers dedicated to understanding connective tissue disorders.

Did you know that studies have found changes in certain complement protein levels in the serum of patients with hypermobile Ehlers-Danlos syndrome? These proteins are key parts of the complement system, a part of the immune system that responds to invaders and triggers inflammation.

The graphic shows a finding from a recent study published by our lab: “Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology”

06/09/2026

📢 Live from Boston!
We are thrilled to share that The Connective Tissue Coalition (CTC) is taking the stage at the World Orphan Drug Congress USA 2026!

Join our founder and board member tomorrow for a crucial conversation on keeping advocacy human, authentic, and impactful in a digital world.

🗓️ Event Details:
Session: Building Authentic Partnerships in the Age of AI Algorithms: Media, Patient Storytelling and The Challenge of Performative Advocacy
Date: Wednesday, June 10th
Time: 1:40 PM – 2:30 PM
Location: Boston Convention & Exhibition Center, Boston, MA

🎙️ Featured Speakers:
Jon Rodis – Founder & President of CTC, National Disability Advocate, and Founder/Co-leader of the Ehlers-Danlos and CTD New England/Massachusetts Support Group.
Donna Sullivan – CTC Board Member, Director of Patient Advocacy at Pathways To Trust, Founder of ElevateRARE, and Co-Producer of Complicated on Apple TV.

If you are attending "America’s Most Important Orphan Drug & Rare Disease Event" this week, make sure to add this session to your calendar! Let’s work together to push past performative advocacy and build truly authentic partnerships.

05/21/2026

Help us accelerate scientific discovery for connective tissue disorders!

By participating in the CTC Silent Auction, your generosity fuels critical research initiatives, including those focused on improving diagnostic tools and developing effective therapeutics for the over 200 debilitating CTDs. We need your support to build a brighter future for millions worldwide. 🫶

The auction ends tomorrow Friday, May 22, 2026. Make your bid count!

05/18/2026

⏱️Urgent Deadline Reminder

The clock is ticking! Don't miss your chance to bid in the CTC Silent Auction for research funding. Bidding closes this Friday, May 22, 2026, at 9:00 PM EDT.

Every bid supports the Connective Tissue Coalition’s critical research grant program aimed at improving the lives of individuals with connective tissue disorders.

Hurry and place your bids today🧑‍💻

Remember: You must register to place a bid on any item!

Together we can advance research for connective tissue disorders.

05/15/2026

🎉The Connective Tissue Coalition is hosting an online silent auction fundraiser to support research.
🙏Please help us reach our goal by donating, bidding, and sharing this post on your own social media channels.
🫶Register now using the link below to be notified when the items go live tomorrow
🔗https://givebutter.com/c/ctc-research-silent-auction-copy-2-vmmhzn/auction/register

05/01/2026

🩵May is EDS Awareness Month: The Connective Tissue Coalition is Championing HOPE 🦓

This month, the Connective Tissue Coalition (CTC) is focused on driving accurate and progressive awareness and cutting through misinformation to provide genuine Hope through Advocacy, Research, and Community.

We are dedicated to changing the landscape of Ehlers-Danlos Syndrome (EDS) and taking our community "far from the invisible and into the light of clarity and true understanding".

🔬 Hope Through Research

Our core mission is to help initiate, promote, and fund direct and substantive medical research that is geared to the areas needed most. We prioritize advancing research, accurate diagnosis, and new treatments.

🤝 Hope Through Community

Join us! We strive to provide free and comprehensive resources, support, and advocacy opportunities for individuals, families, and caregivers.

Lets continue the movement to correct misinformation and initiate viable, on-point research that improves quality of care for everyone affected by EDS.

04/30/2026

🎉 We Did It! An enormous THANK YOU for the first annual 'We Are CTC 5K Run for Research' in Hampton Beach, NH! 🎉

What an incredible day on April 25th as we gathered at the Hampton Beach Seashell Stage State Park to run, walk, and raise awareness for connective tissue disorders (CTDs)!

To our amazing attendees: Thank you to every runner, walker, and virtual participant across the U.S. who joined our mission. Your participation and generosity directly support the Connective Tissue Coalition's 'Research Drive for 2025 and Beyond' and our efforts to advance scientific discovery for Ehlers-Danlos, Marfan's, and Loeys-Dietz Syndromes!

To our dedicated volunteers: A huge shoutout to our volunteers—especially our wonderful Race Director, Lynnette Vaillancourt—who made this inaugural 5K a massive success! Your hard work, enthusiasm, and support on Saturday were truly invaluable. 🙌

To our incredible sponsors and special guests: We extend our deepest gratitude to all our event sponsors and those who contributed to our silent auction, including Dr. Paldeep Atwal and author Diana Jovin. Your commitment is vital in improving the lives of those affected by CTDs.

We are so grateful for our community! Stay tuned for more photos from Lynnette Stebbins Photography coming soon on our website!

04/28/2026

📣Join our EDS Awareness Month virtual watch party featuring the powerful film COMPLICATED Saturday May 2nd, from 2-4pm EST. This viewing will include a post film discussion with families from

Tickets on Eventbrite are just $3 USD! And available to view worldwide. Join this special virtual watchparty and see why people are saying, "it's powerful and heartwrenching". And "made me cry".

🔗Link to register: https://bit.ly/complicatedCTC
We'd really love for this to reach a wider audience, please share!