Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Complex Regional Pain Syndrome (#CRPS) – sometimes referred to as the "suicide disease" due to its profound impact on quality of life – has long challenged us with its symptom-based treatments and unclear underlying mechanisms. In our study published in BMC Molecular Medicine, we describe, for the first time, two biological subtypes of CRPS type I that are consistent across both skin and blood. Interestingly, the transcriptomic differences between these subtypes are more pronounced than those between affected and non-affected skin, which might help explain the observed heterogeneity among patients. We also identified IL-1RA as a serum marker with potential to distinguish these subtypes. A heartfelt thank you to all the authors, institutes, and especially to the to Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) for funding this work. Balgrist Campus AG, Universit?tsklinik Balgrist, Rheumatology USZ, Functional Genomics Center Zurich Authors: Pamela Bitterli, PhD, Jüngel Astrid, Melina Pérez Vertti Valdés, Jan Devan, Hubert Rehrauer, Lennart Opitz, Laura Sirucek, Petra Schweinhardt, Sabrina C., Oliver Distler, Florian Brunner https://rdcu.be/edloI

The EXPERT Act would put researchers in the same room with patients and funders to work together toward shortening the timeline on the creation of drugs that treat rare diseases like #CRPS.

In the latest post on the RSDSA blog, Lisa Van Allen, Chair of RSDSA’s Advocacy Committee, details her trip to Washington, D.C. for Rare Disease Week and highlights her asks, the congressional representatives she met, and how Warriors can contact their members of Congress regarding #CRPS and other rare disease concerns.

RSDSA is hosting a free Facebook and YouTube Live with Philip Getson, D.O., tonight, Wednesday, March 5th at 7p Eastern. He will join us to speak about the latest developments with #CRPS and answer questions provided by the community. At 7pm Eastern, visit our Facebook Page (facebook.com/RSDSA) and YouTube Channel (youtube.com/@RSDSA/streams) to watch the livestream. If you don't see it right at 7pm Eastern, refresh the screen until you do. There is no prior registration required! The livestream will be recorded, so if you miss it we recommend rewatching it later on the RSDSA YouTube Channel.

Many individuals reach out to RSDSA in order to complete an “In Honor/In Memory” gift for a loved one with CRPS. We've highlighted answers to frequently asked questions regarding this process. ???

The February 2025 edition of RSDSA's digital newsletter, "In Rare Form," is now available: https://bit.ly/4hBWcR8 In this issue, we provide details about our March 5th livestream with Dr. Philip Getson. During this webinar, the good doctor will answer 20 #CRPS-related questions that are sent to us. This edition also features an article on self advocacy, registration information for Rare Disease Legislative Days, new developments, spring events, and much more. If you are interested in sponsoring a future issue of In Rare Form, please contact us via [email protected].

Communicating directly with your legislator is the best way to promote change in the laws and policies affecting healthcare in the United States. When you meet with a legislator or staff member, preparation is important to assure your message is clearly and succinctly communicated. A “one-pager” is the best way to do this.

Special thanks to Pradeep Chopra, MD for providing insight on Journavx and for answering the questions that many CRPS Warriors have wanted to know since Thursday's approval announcement: https://bit.ly/3EiLCQq

"But for more modern skeptics, this is where I should add that chronic pain also isn’t just “all in your head” or “not really that bad” — or any of the other ways in which people who suffer from it are still regularly gaslit and dismissed."

RSDSA is seeking a motivated and creative social media intern to join our team in spring 2025. This undergraduate intern will have the opportunity to contribute to various projects as we continue to support our #CRPS Warriors.