Monthly Archives: May 2019

Upcoming Events

May 17th 2019 EDS Leadership Conference | Where: 7440 Mason Montgomery Rd., Mason, Ohio.

The conference is free, but space is limited. If you can’t attend, sign up for the live stream! The mission of our EDS Leadership program is to train and support existing and potentially future leaders to help their members with managing EDS and related conditions.

May 21st RI EDS/CTD Awareness and Support Group Hosts AWARENESS DAY AT THE RI STATE HOUSE Join us and help raise awareness this May at our State House! We will have 2 tables set up with free awareness information and we need volunteers available to help us hand out information and talk to our legislators about what it is like living with a connective tissue disorder. You don’t need experience! Come join us for a fun day, materials will be provided.

June 1st 2019 Marfan Foundation’s Boston Walk For Victory • 12:00 pm – 3:00 pm

Boston Common – 139 Tremont Street, Boston, MA 02111 To join the EDS Team Zebra here is the link! The Walk for Victory is The Marfan Foundation’s nationwide walk program held in various cities across the country to bring the Marfan syndrome and related disorders community together. The walks are non-athletic, family-oriented events that focus on fundraising and fun.

June 8th RI EDS/CTD Awareness and Support Group Meeting 2pm-4:30pm Fusion Patient Panel

A discussion with connective tissue disorder patients who have had neck fusion. Topics will be about patient experience with surgery and recovery and what process they went through preparing for surgery. Q and A and group discussion will follow.NO MEDICAL PROFESSIONALS WILL BE SPEAKING, THIS IS A NON MEDICAL PATIENT EXPERIENCE TALK. Contact if you are interested in being on the panel.

June 9th Ehlers-Danlos New England/Massachusetts Support Group and MA Chapter Meeting

1 PM to 4 PM — Where: Children’s Hospital in Waltham-9 Hope Avenue-Deveber Conference Room-Lower Level Please RSVP if you are planning to attend to or

June 15, 4th Annual CSF Disorders Symposium: From Canvas to Clinic – Artistic Management of Cerebrospinal Fluid Disorders Time: 7:30am to 5:00pm This conference is for medical professionals and will be held at the Warren Alpert Medical School in Providence. –RI EDS/CTD Awareness and Support Group will have an information/awareness table at this event, if you would like to volunteer please contact  For more information on the event PLEASE SHARE THIS WITH YOUR DOCTORS

July 10-14th  35th Annual Marfan Foundation Conference to be held in Houston, TX

July 24-27 ASAP Chiari & Syringomyelia Conference Philadelphia (Center City), Pennsylvania

July 26-28th Dysautonomia International 7th Annual Conference Loews Philadelphia Hotel, Pennsylvania

July 30 – August 1, 2019 EDS Global Learning Conference Nashville, TN