Here is what is happening with the RI Support group till May


March 14thRI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library SMALL Meeting Room 600 Sandy Lane Warwick, RI 02886 – In March we are very lucky to have Joanne from RIPAC, The Rhode Island Patient Advocacy Coalition, as a guest speaker. I’ve had many questions about using Cannabis and the patient program in Rhode Island so I hope we have a good turnout for this meeting. Joanne will be talking about the cannabis program here in RI, how the law works, she will go over the caregiver program and talk about what RIPAC has to offer new and existing patients. If you would like to check them out before the meeting, or you are an existing patient looking to set up a new patient orientation the website can be found here – the office is located at 498 Kinsley Avenue, Providence, RI 02909 and the phone number – phone: 401-861-1601

April 18th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Special Guest Speaker – A nurse from Blue Cross is coming to speak to us about the best ways to advocate for ourselves and to get the best care we can, please email any questions you have for the nurse to We will also have an update on May events at the end of this meeting

May 30th RI EDS Awareness and Support Group Meeting 2pm-4pm – Warwick Public Library Large Meeting Room 600 Sandy Lane Warwick, RI 02886. Details to follow!

Miriam May Awareness Event

Take part in our 2nd annual EDS Awareness Event at Miriam! May 4th-May 8th Miriam Hospital is allowing us to set up a table in the hallway for five days in May. The dates are May 4th– May 8th from 8am to 5pm. We will have a table with our Proclamation displayed as well as a couple of small posters with EDS information, information to hand out like the EDNF brochures and others that I bring to the meetings. You don’t need to be overly knowledgeable about EDS, we just need people who want to help that have been affected by EDS (yourself, friend or family member) We will have all the information to provide. It will be fun to get out and raise awareness for EDS and related conditions, and maybe make a new friend while you are at it. Sign up on the Facebook page or email Krista – to join the list of volunteers!

We will be booking meetings this summer and are considering having one on a weekday, if this interests you and you have a day in mind email me – We are also thinking about doing a summer cookout/fundraiser – I am looking for volunteers and ideas!

Upcoming Conferences:

 June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL

August 13th-15t– EDNF Conference-Baltimore, MD

September 26th – Marfan Foundation New England Symposium – Manchester, NH

Exciting news from our friends at The Coalition Against Pediatric Pain! Here at last: Family Summer Camp for Pediatric Pain Patients — Free of Charge!!! The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky from July 14-17th and is free of charge. It will be a time for families and kids that deal with daily pain to kick up their heels and have fun in a safe, accepting environment! For more about this and other things TCAPP is up to –