Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

04/07/2026

Join us for our next Fight the Flame Support Group meeting.

This month’s topic is: Explaining CRPS: How to educate family members, friends, and doctors.

One of the hardest parts of living with CRPS can be helping others understand what you are going through. At this meeting, we’ll talk about ways to explain CRPS more clearly and confidently to the people in your life.

Saturday, April 11, 2026
1–3 PM EST

To RSVP and receive the meeting link, please email:
Beth@FightTheFlame.org

Please share with anyone living with CRPS who may benefit from support, encouragement, and connection.

04/01/2026

Welcome to April! Believe it or not, RSDSA's 7th Annual Walk for CRPS is just a little over two months away! 👟

We’re excited to have teams all over the country from California to Missouri to Massachusetts and everywhere in between. 🎗️

Check out our list of teams and consider joining the team closest to you. This way, you can meet up and walk with fellow Warriors and supporters on Saturday, June 6th: https://linktr.ee/rsdsa

Learn more about registering, joining a team, and sponsoring the Walk here: https://secure.qgiv.com/event/walkforcrps/

03/30/2026

It's that time of year! The EveryLife Foundation for Rare Diseases will provide one-time $5,000 scholarships to up to 58 rare disease recipients this year via the Scholarship Fund.

The Fund helps adults with rare diseases in a variety of educational pursuits, regardless of treatment status.

Applications are open through April 28, 2026 at 2 PM Eastern.

The EveryLife Foundation for Rare Diseases has established the Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status.

03/27/2026

This week on the RSDSA blog we’re hearing from Pennie and her daughter Jess. Jess began her journey after a hip replacement surgery at the age of 24.

Pennie says even though her daughter struggles at times, “she tries so hard to remain positive.” 🧡

Learn all you can about CRPS and ask a lot of questions. Try to stay positive and don’t give up.

03/25/2026

"I didn’t realize how alone I felt until I met these people who made me feel together [as we’re] fighting for our best lives. I am so thankful this retreat was possible." – YAWR San Diego Attendee

Our Young Adult Weekend Retreat: Scottsdale is June 26-29 in Scottsdale, AZ. This weekend is for young adults with Between 18-35. Come meet others who fully understand!

Don't forget that two scholarships to cover registration are available via this application through Tuesday, March 31:

Our YAWRs have been a great success as they offer young CRPS Warriors the opportunity to build a support system.

03/24/2026

Register today!

Join us next Thursday, March 26, at 2 pm ET for the latest RDLA Monthly Webinar. This session will cover recent rare advocacy updates during and following , and review appropriations priorities and recently introduced rare disease-related bills.

The EveryLife Foundation’s Senior Vice President of Policy and Advocacy, Jamie Sullivan, will discuss recent rare disease advocacy activities during and following Rare Disease Week. Then, our Senior Director of Policy, Dylan Simon, will review the FY 2027 appropriations process and priorities. Our guest speakers will share two recently introduced bills. Victoria Gemme, a Director at Leavitt Partners, will discuss the Genomic Answers for Children’s Health Act, H.R. 7118. Sarah Chamberlin, the Founder & Chief Program Officer at Flok Health, will review the Medical Foods and Formulas Access Act, H.R. 5684/S. 3304.

Register for the webinar using the following link: https://hubs.li/Q047pTfF0

03/11/2026

Watch as we go over some FAQs about RSDSA's 7th Annual Walk for CRPS on Saturday, June 6, 2026! Register now at https://secure.qgiv.com/event/walkforcrps

Find the walk closest to you here: https://linktr.ee/rsdsa

03/09/2026

Rare New England’s Rare Connections Patient & Caregiver Support Group is hosting a free meeting on Friday, March 20, 2026 at 6PM Eastern focused on “Navigating Mental, Behavioral & Medical Systems for Children with Disabilities & Rare Conditions: https://bit.ly/4bgclKg

It will be led by Beth Bergstrom who is not only a mother of children with disabilities, but an Assistant Program Manager at Parent/Professional Advocacy League.

We're sharing this as a potential resource for parents who have a child/children with . 🧡

03/06/2026

Missed our livestream with Dr. Norman Harden? Check out the below clip and be sure to watch the full video over on our YouTube Channel: https://youtube.com/live/nb-lcDvkP7Y

03/05/2026

Last call: Register for next week's free webinars now! ↓

03/04/2026

"Every part of the weekend—from the conversations to the activities to just being in a space where I didn’t have to explain myself—was truly positive and healing. I left with new friends, fresh perspective, and most importantly, a renewed sense of hope and belonging." – YAWR Nashville Attendee

Our Young Adult Weekend Retreat: Scottsdale is June 26-29 in Scottsdale, AZ. This weekend is for young adults with Between 18-35. Come meet others who fully understand.

Don't forget that two scholarships to cover registration are available via this application through Tuesday, March 31, 2026: https://bit.ly/40PtZPT

Young Adult Weekend Retreat: Scottsdale