Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

07/27/2026

🧬 Is there a stronger link between Ehlers-Danlos syndrome (EDS) and Complex Regional Pain Syndrome (CRPS) than previously recognized?

A new study published in RAPM analyzed data from 54.2 million commercially insured patients to explore the relationship between EDS and CRPS.

🔍 Key findings:
📊 Patients with EDS had an ~11-fold higher proportion of recorded CRPS diagnoses compared with patients without EDS.
👩 Women represented the vast majority of patients with both EDS and CRPS.
🦵 CRPS Type 1 accounted for 76.8% of cases, with the lower extremity being the most commonly affected site.
📈 These findings highlight a strong population-level association between EDS and CRPS diagnostic coding in a national claims database.

💡 Recognizing this association may encourage earlier identification, multidisciplinary evaluation, and future research into the biological mechanisms linking EDS and CRPS.

📖 READ HERE: https://doi.org/10.1136/rapm-2026-107817

07/23/2026

This guide walks you through the exact booking steps for Uber and Lyft, shows you which cities have service, explains your protections under the Americans with Disabilities Act (ADA), and gives you backup plans for when a WAV does not show.

Learn how to schedule a wheelchair-accessible Uber or Lyft, which cities have WAV service, your ADA rights, and backup options. Read the full guide.

07/17/2026

Please help members of the community with the following question:

Other than Uber/Lyft/taxis and public transportation, is anyone aware of (medical) transport that can help CRPS Warriors get to and from treatment?

We’re looking for:
→ Ardmore PA to/from Marlton NJ
→ The Mentor, Ohio area (outside of Cleveland)

These individuals do not have family who can assist and oftentimes a person has to stay with them during the treatment and/or check them out. One person has suggested care.com. What have you used? ↓

07/17/2026

As of Friday, July 17th, Ambros Therapeutics' neridronate trial now has 19 sites.

Visit https://crps-rise.com for more details as well as their study page on the ClinicalTrials.gov website (https://bit.ly/4u7YSfa) as new trial sites are rolling out weekly!

This is *not* RSDSA’s study. Please direct study questions and comments to [email protected].

→ Phoenix, AZ
→ Tucson, AZ
→ Napa, CA
→ Pasadena, CA
→ Tustin, CA
→ Washington, DC
→ Brandon, FL
→ Daytona Beach, FL
→ Pembroke Pines, FL
→ Lawrenceville, GA
→ Newnan, GA
→ Chicago, IL
→ Orland Park, IL
→ Reno, NV (new)
→ Shrewsbury, NJ
→ Charlotte, NC
→ Wilmington, NC
→ Winston-Salem, NC
→ Houston, TX

07/15/2026

Join us on July 22 for a Rare Disease Congressional Caucus Briefing. Policy Solutions for Rare Diseases: Improving Access to Care, Treatment, and Community Supports

Hosted by Rare Disease Legislative Advocates in partnership with the Rare Disease Congressional Caucus, this briefing brings together leading voices to discuss the policy changes our community needs most.

Speakers:
- Carolyn Applegate, MGC — Johns Hopkins Medicine
- Sarah Chamberlin — flok Health
- Maynard Friesz — Cure SMA
- Jason Harris — National Psoriasis Foundation
- Shannon Wood — Muscular Dystrophy Association

Note: Each participant must register individually with their own unique email address. Register here: https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-briefings/?utm_content=382440565&utm_medium=social&utm_source=facebook&hss_channel=fbp-188286367849015 -id-1

07/14/2026

RSDSA would love to learn more about our community members so we can better serve you. Please take a few minutes to complete our short survey (and help us spread the word!): https://bit.ly/3Rhym5l

Participation is completely optional, and nothing will change if you choose not to respond to the survey.

As a thank you, two participants will be randomly selected to receive a $50 Visa gift card on August 13.

The information collected will be used for our organization's development and impact reporting.

If you provide any personal information on this form, it will only be shared with RSDSA staff and our Board of Directors.

Thank you for being part of the RSDSA community! https://bit.ly/3Rhym5l

07/10/2026

As of Friday, July 10th, Ambros Therapeutics' neridronate trial (details here: https://bit.ly/4uOQEZJ) now has 18 sites.

Please keep an eye on their study page (https://bit.ly/4u7YSfa) as new trial sites are rolling out regularly!

This is not RSDSA’s study. Please direct study questions and comments to [email protected].

→ Phoenix, AZ
→ Tucson, AZ
→ Napa, CA
→ Pasadena, CA
→ Tustin, CA
→ Washington, DC
→ Brandon, FL
→ Daytona Beach, FL (new)
→ Pembroke Pines, FL
→ Lawrenceville, GA (new)
→ Newnan, GA
→ Chicago, IL (new)
→ Orland Park, IL
→ Shrewsbury, NJ (new)
→ Charlotte, NC
→ Wilmington, NC
→ Winston-Salem, NC
→ Houston, TX

07/09/2026

Check out these recent conversations on the RSDSA Message Board:

→ muhmo wants to learn more about supporting their partner who has CRPS. 🫂 https://bit.ly/4f1Q3xv

→ sarahgonzales' thread on spinal cord stimulators has sparked tons of conversations and questions about insurance, approval, and the different brands of stimulators 🩻 https://bit.ly/3Rs6xHx

→ fraublucher is in Georgia and is looking to connect with others in GA, SC, and FL. 🍑 https://bit.ly/4f1GEGg

Join the conversations, and ask your own question, by visiting messageboard.rsds.org. You must be signed in to view and contribute to posts.