Monthly Archives: February 2015

Upcoming Events

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 – http://ripatients.org/ 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 krista@rieds.org. We will also have an update on May events at the end of this meeting

Upcoming Conferences:

 June 25th -27th –CEDSA (Center for Ehlers-Danlos Syndrome Alliance) Conference-Romulus, MI https://cedsa.org/cedsa-info/matrix-of-ehlers-danlos-syndrome-conference-2015.html

 August 6th–9th– The Marfan Foundation Conference-Chicago, IL http://www.marfan.org/resources/patients/conference

August 13th-15t– EDNF Conference-Baltimore, MD http://ednf.org/annual-conference

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 – www.TCAPP.org

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