A Support Group for all Ehlers-Danlos Syndrome, Marfan, Loeys-Dietz & other Rare Genetic Connective Tissue Disorder (CTD) Patients, Caregivers, Allies, Friends and Loved Ones
Our diversity is our strengtH
Creating a better world for people with genetic connective tissue disorders through
AWARENESS, SUPPORT & THE PROMOTION of RESEARCH
The EDS and CTD New England/MA Support Group continues the work that patient advocate Jon Rodis created a decade ago. What began as a modest patient-run support group now offers regular meetings attended by some of the foremost doctors, researchers, professionals, and advocates in the Ehlers-Danlos Syndromes, Marfan Syndrome, and Loeys-Dietz community. As well, we host an email list of over 4,000 recipients, and our newsletters share insight each month into the latest initiatives and research into connective tissue conditions. Welcome!
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Who We Are
News, Initiatives, & Research
Information, Groups, & Resources
The EDS and CTD New England /MA Support Group has maintained a steadfast goal to raise the bar of awareness, support, and research of Ehlers-Danlos, Marfan, Loeys-Dietz and other Connective Tissue Disorders to a much higher level. Always more than just a group providing support and camaraderie, we work together to raise awareness of all genetic connective tissue conditions and inspire new research that may lead to better treatments– and one day, cures.
Our in-person group meets regularly, and remains accessible for remote attendees via Zoom. We regularly host professionals in the top tier of Connective Tissue Disorder care and research, and maintain a library of research and resources by the same. We welcome our allies and friends, anyone with an interest in forwarding our cause and creating positive change for those with genetic connective tissue disorders.
Choose an option below to join. This will initiate our screening process, which we do in order to ensure that our group is a safe space. Once you’re a member, you’ll receive regular email newsletters updating you on group topics and presenters, as well as news, research, and initiatives around the world.
All are welcome! Even those who do not live in New England and cannot attend our in-person meetings are welcome to join our email list and our affiliate Facebook group. Our goal is to spread awareness and education. The more we can share information, the closer to a cure we will be.
Healthcare professionals and researchers of all stripes– including journalists and hospital administrators– are encouraged to join! You’ll receive updates about all Heritable Disorders of Connective Tissue (HDCT) and comorbidities. Learn things you wouldn’t normally see in your practice, and keep up-to-date on current research and initiatives. Even if you just have one patient with a connective tissue disorder, this will help inform your care! As one professional commented, “I learn more from your emails in regards to research and what’s going on in the medical community than I do with any other resource.”
Next Social Meetup:
Oct 18th, 2025
10-noon +beyond
We had our 1st & 2nd Meet-Ups at Revere Beach this year on July 12th and Aug 23rd, and it was great fun to see everyone. Our next ‘Meet-Up’ will be on October 18th at 10 am till 12 Noon or beyond. We also will be organizing a ‘Meet Up Committee’ that will help coordinate future ‘Meet Ups’ in other locations in Massachusetts and around New England. If you’d like to join us, please email email Jon at
wsalmgcdjm@aol.com or jrmarfan58@aol.com
Pexels media by Daily Daisy
Next Support Call: “Newly Diagnosed”
Oct 25*, 2025
*note the change of date!
1-3pm
BY POPULAR DEMAND: Our next support/topic meeting will be titled ‘Newly Diagnosed,’ including all recently diagnosed, those diagnosed over the last year and anyone who would like to join and learn more. Email Jon if you’d like to join us,
Next Support Group:
Dec 7, 2025 Zoom
1-4 pm
Special guest: TBA
Our special guest and full agenda will be announced in coming weeks. Visit again soon! In the meantime…
It was a great pleasure having Dr. Pradeep Chopra as our guest for June 28th’s topic Meeting on ‘Pain and How to Keep It at Bay’. He discussed from head to toe so many details of the multi-comorbidities and conditions that interact and contribute to pain and why. We have a recording available for you! Subscribe to our email newsletter to receive the link and code; just write to Jon at either address listed above.
May is Proclaimed
EDS Awareness Month in Mass.!
Thank you once again, Diana Cleaveland! Read more here.
Puwadon Sang-ngern on Pexels.com
EXCITING ANNOUNCEMENT!
The Connective Tissue Coalition is a new research, initiative, & advocacy organization that we’ve added to our growing list of Resources. Check them out!
New!
Research Participation Opportunities
A bulletin board of research projects looking for subjects or volunteers. Help advance our understanding of CTDs by participating!
EDS and CTD New England/MA Support Group 