fbpx
Donate
Advocacy
Events
Blog
JOIN
STORE

With your support, RSDSA has been able to accomplish these 2021 Initiatives!

  • Provided $7920 to individuals with CRPS who received emergency funding to pay for heat and other utilities, rent, durable medical equipment, travel expenses to obtain medical care and more
  • Sponsored our annual four-day virtual conference attended by thousands of people with CRPS, caregivers, and medical professionals
    • Funded an international study to investigate pain – a role for cross-talk between skin fibroblasts and the nociceptive system in skin of patients with Complex Regional Pain Syndrome (CRPS) ($235,880) submitted by PD Dr. Astrid Jüngel and Prof. Dr. med. et Dr. phil. Florian Brunner, Balgrist University Hospital and University Hospital Zurich
    • Continued publication of a monthly digital newsletter, In Rare Form for the CRPS community which is sent to 21,400 emails with an open rate of 32%
  • Sponsored 13 Facebook Live presentations which highlighted CRPS research, treatment, and many interventions to manage CRPS. Viewed more than 33,000 times
  • Launched our second virtual walk which attracted 57 teams and participants from 34 states and three countries
  • Answered more than 5,000 emails and phone calls which poured into our office. Our compassionate staff answered questions, provided information packets and a list of knowledgeable health professionals who understand and treat CRPS
  • Educated and supported the CRPS community on our Facebook page with 210 posts which reached 633,233 people
  • RSDSA Social Numbers
    • Facebook – 26,248 followers
      • We successfully marketed the Longest Day of Golf, our new digital newsletter, our second virtual conference, our second virtual walk, networking nights, and game nights via Facebook, which has our largest audience.
    • Twitter – 4,975 followers
      • We hosted Rare Disease Week and had a live Twitter chat that participants were able to join in order to meet others with CRPS.
      • We successfully marketed the Longest Day of Golf, our new digital newsletter, our first virtual conference, our first virtual walk, networking nights, and game nights via Twitter as well.
    • Instagram – 3,003 followers
      • Continued to post recaps of Facebook Lives on Instagram
    • YouTube – 6,356 subscribers
      • We gained 1,464 subscribers last year and have over 1 million views