or twenty‑five years, a small non‑profit in Hillsborough has answered the phone when almost no one else would — offering education, support and advocacy to those living with Complex Regional Pain Syndrome.
Living With RSDS, Inc. is a non‑profit 501(c)(3) organization founded in 1997 by those living with CRPS. Our mission is to offer education, support and advocacy to those afflicted with Complex Regional Pain Syndrome — also known as Reflex Sympathetic Dystrophy Syndrome — along with their family, caregivers, friends, communities and medical professionals.
CRPS/RSDS is a rare chronic neuro‑inflammatory disorder. This extremely painful and often disabling syndrome is caused by a malfunction of the nervous system and immune system in response to a trauma. The nerves misfire, causing constant pain signals to be sent to the brain. There is no single diagnostic tool, and CRPS/RSDS remains without a cure.
“We currently provide two free virtual meetings per month via Zoom — open to anyone whose life has been touched by CRPS.”
What began around a kitchen table in Hillsborough has, over a quarter century, become a steady, patient‑led resource for families across New Jersey and beyond — a place where the language of chronic pain is finally understood.
Six core programs, most offered at no cost to participants. Where a fee appears, it covers materials only — scholarships are available.
Two free Zoom meetings each month, facilitated by long‑time CRPS patients. Open to patients, caregivers, family and friends — anywhere in the United States. Sessions are confidential, never recorded, and structured around a topic plus open sharing.
A curated, plain‑English library of guides on diagnosis criteria, treatment pathways, insurance appeals and living well with chronic pain — mailed on request at no charge to NJ residents.
A 60‑minute private session with a trained navigator — by phone or Zoom — to walk through a new diagnosis, a denied claim, or a difficult conversation with a provider. Fee covers materials; waived on request.
A dedicated monthly space for spouses, parents and adult children of CRPS patients — because the people beside the patient carry this too.
Template letters, appeal language and step‑by‑step guidance for disability, FMLA and prior‑authorization disputes — reviewed annually by a volunteer legal team.
A Saturday each fall in Hillsborough — speakers, clinicians, vendors and patients together in one room. Suggested donation covers lunch; no one is turned away. Includes a quiet sensory‑friendly room and a caregiver lounge.
Mailed within five business days to anyone in the U.S. requesting it — a printed primer, a journal, and a hand‑written note from a peer.
Most CRPS resources online are clinical, cold, and aimed at physicians. We are not. Living With RSDS was founded by patients, and every program is shaped by the question: what would have helped us on day one?
We are small on purpose. There is no call center, no automated triage — when you reach out, you reach a person who has sat in the same waiting room, filled out the same forms, and felt the same disbelief from providers who had never heard of CRPS.
Twenty‑five years in, we are still here, still free, still answering.
Whether you were diagnosed last week or last decade — whether you are a patient, a spouse, a clinician or a friend — you are welcome here. Use the form, call the line, or write to us by post. We typically reply within two business days.