Connective Tissue Coalition

08/28/2026

You can’t always see what it’s like to live with a connective tissue disorder—but that doesn’t mean it isn’t real. 💙
The pain. The fatigue. The uncertainty. The endless appointments, medications, adapting, advocating, and planning around what your body may—or may not—allow you to do that day.

For many people living with connective tissue disorders, these challenges are invisible to the outside world. But invisible does not mean insignificant.

To everyone navigating life with a connective tissue disorder:
💙 Your experience is valid.
💙 Your struggles are real.
💙 Your resilience matters.
💙 You are not alone.

At CTC, we believe in creating a community where people are seen, heard, understood, and supported—and where education, advocacy, and research can help create a better future.

Stronger Together. Unseen No More.

08/11/2026

"Being a mother is learning about strengths you didn't know you had and dealing with fears you didn't know existed."

08/07/2026

We have teamed up with with Elevate RARE, The Coalition Against Pediatric Pain, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) to understand the experiences of families with rare and genetic diseases as they navigate the health care system. Please share this survey with others who may be interested in participating.

Survey Link: https://elevaterare.org/survey/

07/31/2026

Complicated debuted at the Slamdance Film Festival in Los Angeles on February 20, 2025. It now qualified for Academy Award consideration for Best Documentary Feature. We were happy to sponsor another showing at the 2026 Ehlers Danlos Society Conference in Dallas Texas.

This film explores the challenges of Ehlers-Danlos syndrome (EDS), medical gaslighting, and false allegations of medical child abuse

Director: Andrew Abrahams, co-produced by CTC board member Donna Sullivan and distributed by Open Eye Pictures.

Where to Watch for Free: You can stream the full movie for free with advertisements on PLEX or on YouTube.

It is also available via the free, ad-supported tier on Roku (available August 14th) and Tubi.

Subscription Streaming: If you have a YouTube TV membership, you can watch it through your active subscription add-ons.

Rent or Purchase: You can rent the documentary digitally for $4.99 USD on the Apple TV Store or $3.99 on Amazon Prime.

Have you seen it?

07/31/2026

Qualified for an Academy Award and now available on Amazon Prime, the film can also be ordered for organizations and classrooms at complicatedthemovie.com. We're bringing unprecedented visibility to EDS! Let's keep up the momentum🦓

07/25/2026

Many people living with connective tissue disorders also experience migraine or recurring headaches, yet these overlapping experiences are still not well understood.
Kōkūn, a US-based nonprofit focused on invisible conditions, is conducting a global research study to better understand the day-to-day experiences of people living with headache disorders and migraine.
If you experience migraine or recurring headaches, I'd encourage you to participate.
The survey is anonymous, open worldwide and takes about 5 to 10 minutes to complete
Your experiences can help improve our understanding of migraine and its relationship with other invisible conditions.
Take the survey: https://kokun.space/research/headaches/?utm_source=ctc
Please also consider sharing this with others who may be interested.

Help make headache and migraine experiences visible by contributing to the Understanding Headaches and Migraine research, a global initiative by Kōkūn.

07/24/2026

Do you live with hEDS or HSD and chronic pain? We want to hear about your experience.
Pain is common in hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), but a number on a 0–10 pain scale may not fully capture what pain means in everyday life.

Researchers at the University of Arkansas are conducting a study to better understand pain experiences and the impact of pain on daily life among people with hEDS and HSD.
The survey asks about your pain, health and quality of life, daily activities, relationships, work and social participation, healthcare experiences, and emotional responses to living with pain.
You may be eligible if you have a verified diagnosis of hEDS or HSD.

Your experience can help researchers better understand not just how much pain people with hEDS/HSD experience, but what that pain costs them in everyday life.
⏱️ Survey takes approximately 30-45 minutes.
🌎 Must live in the United States and be 18 or older
🔗 https://uark.qualtrics.com/jfe/form/SV_3OcGfG3E3H04Yiq
Please consider participating and sharing this study with the hEDS/HSD community.
University of Arkansas IRB Protocol # 2605676475
Principal Investigator: Dr. Julie Hill at [email protected].

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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”