Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

04/23/2026

We heard you loud and clear! After years of successful Young Adult Weekend Retreats, we knew it was time to host a retreat for adults with CRPS.

The CRPS Connection: RSDSA's Adult Weekend Retreat - Strategies and Skills for Living with CRPS will take place October 2-5, 2026 in Philadelphia! This event is for adults with CRPS who are 36 and over: https://bit.ly/3QoEBUc

The CRPS Connection is a thoughtfully designed, in-person gathering focusing on strengthening practical skills, sharing lived experiences, and building meaningful connections with others who truly understand the day-to-day realities of CRPS.

Learn more about the weekend and register at https://bit.ly/3QoEBUc

04/21/2026

The April 2026 edition of RSDSA's digital newsletter, In Rare Form, is now available: https://bit.ly/4sRCQfE

🔬 Research 🔬
Our cover story focuses on the Complex Regional Pain Syndrome-Relief and Improvement Study for Efficacy (CRPS-RISE) trial by Ambros Therapeutics. Click the link above to learn how the trial works and to see if you qualify.

We also share an update on opioid use for CRPS in Korea (page 5) and a list of additional CRPS research studies (page 15).

🫂 Support 🫂
We'll host a livestream with CPRS Warrior Gabi Baylor, an associate professional clinical counselor, on Thursday, May 14th at 7PM Eastern. Send us the questions you would like Gabi to answer next month!

Our Support Group Corner also highlights a new support group in North Delaware. You can find a link to all of our current in-person, Zoom, Facebook, and peer support groups on page 16.

🎗️ Community 🎗️
RSDSA's 7th Annual Walk for CRPS is coming up fast on Saturday, June 6th! It's not too late to register, create a team, or sponsor.

We also remind everyone about our Young Adult Weekend Retreat: Scottsdale and introduce everyone to The CRPS Connection: RSDSA's Adult Weekend Retreat, taking place this October in Philadelphia!

If you are interested in sponsoring a future issue of In Rare Form, please contact us at info@rsds.org.

04/15/2026

In the latest post on the RSDSA blog, we hear from Jamie S. who has had since 2013 due to a work injury when she was an EMT.

Her honest and open post highlights how difficult things have been, but also how she tries to not let her CRPS define her.

Stay strong! I know it’s easier to say than to do, but that is what will get you through the bad days, weeks, and years.

04/14/2026

We're excited to welcome Carolyn McNoldy to the RSDSA Board of Directors!

Carolyn has had for approximately 16 years after elbow surgery. She became involved with RSDSA after attending the first Young Adult Weekend Retreat.

She now moderates the Young Adult Weekend Retreats (https://bit.ly/40PtZPT) held in various cities throughout the country. She also moderates the VA, MD, DC virtual support group and the RSDSA young adult virtual support group (https://bit.ly/4enVzM9).

Carolyn started and runs “Carolyn’s Cards” for RSDSA (https://bit.ly/3O6QihA). Her goal is to provide help, comfort, knowledge, smiles, and positive vibes to those with chronic pain.

She resides in Virginia with her two dachshunds. She has a Bachelor of Science in Administration of Justice, a Paralegal Certificate from George Mason University, and a Masters of Paralegal Studies from George Washington University.

Welcome to the Board, Carolyn!

About RSDSASupporting the CRPS Community Our HistoryThe Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is a 501(c)3 not-for-profit organization based in Milford, CT, founded in 1984 by Rosalyn Davis and Audrey Faith Thomas. Our mission is to provide support, education, and hope to all aff...

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

03/09/2026

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 . 🧡