Reflex Sympathetic Dystrophy Syndrome Association

What Reflex Sympathetic Dystrophy Syndrome Association does

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is a U.S.-based 501(c)(3) non-profit organization founded in 1984 and headquartered in Milford, Connecticut. Its mission is to provide support, education, and hope to individuals affected by Complex Regional Pain Syndrome (CRPS/RSD), while funding research to develop better treatments and a cure. The organization primarily serves three segments: adult and pediatric CRPS patients and their families/caregivers, medical professionals treating CRPS, and researchers working on the disease, with a supplementary focus on veterans who may develop CRPS from service-related injuries. CRPS affects up to 200,000 individuals in the United States annually and is classified by the FDA as a rare disorder.

RSDSA operates an integrated non-profit platform spanning patient education, community support, and research funding. Core products include the rsds.org information portal, free adult and pediatric information packages, a dedicated message board community (messageboard.rsds.org), local and regional support groups, the Young Adult Weekend Retreat, an annual conference (2025 Conference Hub referenced), the Color The World Orange™ annual awareness day, the Walk for CRPS fundraising series, and the CRPS Warriors Memorial. Research-side offerings include the Research Grants Program, the Cynthia Penaskovic Memorial Fund, educational presentations, and the 5th Edition (2022) of the Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines. The organization also provides free accredited online courses to healthcare professionals and maintains the International Research Consortium linking CRPS laboratories worldwide.

The organization's revenue model is donation-driven. As a registered 501(c)(3) (EIN 22-2559139), RSDSA raises funds through individual donations, corporate partnerships (including Abbott Neuromodulation, multiple family foundations, The CRPS Law Firm, Vitalitus, and Ambros Therapeutics), fundraising events (walks, galas, community fundraisers, regional sports partnerships), and earmarked patient assistance and research funds. All patient-facing resources are provided free of charge. The organization employs 1-10 staff and is governed by a Board of Directors with a Scientific Advisory Committee. RSDSA does not develop proprietary technology; its platform comprises a content website, a community message board, and dissemination of medical information and clinical guidelines.

Name

Reflex Sympathetic Dystrophy Syndrome Association

Legal name

Reflex Sympathetic Dystrophy Syndrome Association

Website

https://rsds.org

Company type

Private

Founded year

1984

Operating status

Operating

Headcount range

1–10 employees

Short description

RSDSA is a U.S. 501(c)(3) non-profit founded in 1984 that supports individuals affected by Complex Regional Pain Syndrome (CRPS/RSD) through education, community programs, patient assistance funds, and research grants, serving patients, families, medical professionals, and researchers.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241), Child and Youth Services (62411)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Financial Assistance & Benefits Navigation Services (BPAGAEAK)

Keywords

• Patient advocacy services
• Chronic pain support
• Rare disease education
• Medical research grants
• Health community programs

Headquarters

HQ city

Milford

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) non-profit organization (EIN 22-2559139), RSDSA is primarily funded through donations from individuals, families, and corporate partners. The organization hosts fundraising events including walks, galas, and community fundraisers to support research grants, patient assistance funds, and operational costs.
2. Patient Assistance Funds: RSDSA provides financial assistance to patients through designated funds, including the Cynthia Penaskovic Memorial Fund which supports CRPS research, and patient assistance funds for those affected by CRPS to access treatment and care.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels9 records

Core offering

RSDSA provides free educational resources, peer support programs, and research funding for individuals affected by Complex Regional Pain Syndrome (CRPS/RSD). Its core offerings include free adult and pediatric information packages, accredited online courses for healthcare professionals, an online message board community, local support groups, an annual conference, a Young Adult Weekend Retreat, patient assistance funds, and research grants administered through its International Research Consortium.

Product overview

RSDSA operates as a single integrated non-profit platform providing support, education, and hope to all affected by CRPS (Complex Regional Pain Syndrome) while driving research for better treatments and a cure. The organization offers a comprehensive suite of programs including its primary website and information portal, free downloadable information packages for adult and pediatric patients, an online message board community for peer support, support groups, young adult retreats, an annual conference, research grants, educational presentations, clinical treatment guidelines, and advocacy events including the Color The World Orange Day awareness campaign and Walk for CRPS fundraising events. These services work together to fulfill RSDSA's mission of providing support, education, and hope while advancing CRPS research.

Differentiator

Problem solved

Functional benefit

Brands

• Color The World Orange™: Annual awareness event held on the first Monday of November to spread awareness of CRPS/RSD.
• CRPS Warriors Memorial
• Carolyn's Cards
• CRPS-RISE

Products and services

• RSDSA Information Packages Free downloadable and mail-delivered resource packages providing comprehensive CRPS information for adult and pediatric patients, including diagnostic criteria, treatment overviews, and guidance for newly diagnosed individuals.
• Accredited Online Courses for Healthcare Professionals Free accredited online courses on CRPS diagnosis, treatment, and management for physicians, nurses, physical therapists, and other healthcare professionals.
• RSDSA Message Board Community An online support community providing a collaborative environment for CRPS patients, caregivers, friends, family members, and advocates to connect, share experiences, and ask questions related to their journey.
• RSDSA Annual Conference Annual in-person gathering bringing together CRPS patients, caregivers, medical professionals, and researchers for expert presentations, education, networking, and community building.
• Young Adult Weekend Retreat An annual in-person retreat designed for young adults living with CRPS, offering opportunities for connection, skill-building, and mutual support among peers, including educational sessions.
• RSDSA Support Groups Local and regional support groups connecting CRPS patients with others who understand their experience, providing peer support and shared coping strategies.
• Patient Assistance Funds Designated financial assistance resources to help CRPS patients access care, treatment, and support services.
• Cynthia Penaskovic Memorial Fund A research fund established in memory of Cynthia Penaskovic, providing fellowships and grants to promising laboratories and scientists targeting CRPS research for a cure.
• Walk for CRPS Annual nationwide fundraising walk events to raise awareness and funds for CRPS research, with local community walks held across the country.
• Color The World Orange Day Annual awareness event held on the first Monday of November to spread global awareness of CRPS/RSD, allowing everyone touched by the condition to join together in raising awareness.
• Send a Child to Camp A program supporting children affected by CRPS to attend camp, providing recreational and peer support opportunities for youth living with the condition.

Quantifiable outcome

• Up to 200,000 individuals affected by CRPS in the US annually receive education, support, and resources through RSDSA programs

Named customers3 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core and minor.

• Abbott (Neuromodulation)coreStrategic or Co-development PartnerAbbott Neuromodulation is listed as a corporate partner supporting RSDSA. Abbott develops spinal cord stimulation and other neuromodulation technologies used in CRPS treatment, including devices that can help manage chronic pain conditions.
• The CRPS Law FirmminorStrategic or Co-development PartnerThe CRPS Law Firm is listed as a corporate partner, providing legal resources and support for individuals dealing with legal issues related to CRPS, including workers' compensation and disability claims.
• VitalitusminorStrategic or Co-development PartnerVitalitus is listed as a corporate partner supporting RSDSA. The company appears to provide health-related services or products relevant to the CRPS community.
• Ambros TherapeuticscoreStrategic or Co-development PartnerAmbros Therapeutics is a clinical-stage biotechnology company based in Irvine, California conducting the CRPS-RISE clinical trial testing neridronate for CRPS Type 1. RSDSA provides information about this trial to the patient community.
• International Research ConsortiumcoreStrategic or Co-development PartnerRSDSA established an International Research Consortium linking laboratories worldwide to foster greater collaboration among scientists researching CRPS, producing more robust studies leading to better treatments and a cure.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders: NORD is the largest US umbrella advocacy organization for rare diseases, including CRPS, providing policy advocacy, research grants, and patient assistance programs. It is comparable to RSDSA in mission and structure but operates at much broader scale across 7,000+ rare diseases rather than specializing in CRPS.
• Arthritis Foundation: The Arthritis Foundation is a major US health nonprofit supporting patients with arthritis and related chronic pain conditions, funding research, advocacy, and community programs. It is comparable to RSDSA's chronic-pain community model but at vastly larger scale and across a broader disease portfolio.

Others

• Boston Scientific: Boston Scientific is a major neuromodulation device maker whose spinal cord stimulators and radiofrequency ablation systems are used in CRPS treatment. It is an adjacent ecosystem participant and potential future corporate partner for RSDSA given its overlap with the CRPS treatment landscape.
• Medtronic: Medtronic is one of the largest manufacturers of spinal cord stimulation and intrathecal drug delivery systems used in chronic pain management including CRPS. It operates adjacent to RSDSA as a major device industry player whose neuromodulation portfolio targets the same patient population RSDSA serves.
• Abbott Neuromodulation: Abbott Neuromodulation is a listed core strategic partner of RSDSA and a leading manufacturer of spinal cord stimulation devices used in CRPS treatment. It is adjacent ecosystem rather than a peer - a device industry supplier that benefits from RSDSA's patient education and advocacy work.
• International Association for the Study of Pain: IASP is the leading international professional society for pain research and treatment, convening clinicians and scientists who develop the clinical guidelines RSDSA disseminates. It is adjacent to RSDSA - operating upstream as the scientific authority rather than competing as a patient advocacy organization.

Regional players

• CRPS Canada: CRPS Canada is a Canadian patient advocacy organization supporting individuals affected by Complex Regional Pain Syndrome with awareness, education, and peer support. It is a regional CRPS-specific peer to RSDSA, serving Canadian patients with comparable programs but distinct geographic catchment.

Direct peers

• U.S. Pain Foundation: U.S. Pain Foundation is a national nonprofit providing education, support, advocacy, and research funding for people living with chronic pain conditions. It is directly comparable to RSDSA in mission, patient advocacy focus, and nonprofit donation-driven revenue model, though it covers a broader chronic pain portfolio rather than CRPS specifically.
• American Chronic Pain Association: ACPA is a long-standing nonprofit patient advocacy organization offering peer support groups, educational resources, and self-management tools for individuals with chronic pain. It mirrors RSDSA's model of community-led support, free resources, and awareness building for the same chronic pain patient population.
• Burning Nights CRPS Support: Burning Nights is a UK-based charity dedicated specifically to CRPS/RSD awareness, support, and research, operating support services, awareness walks, and information resources. It is a CRPS-specific direct peer to RSDSA, with the geographic separation placing it primarily as a UK counterpart serving the same rare-disease community.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Instagraminstagram.com/rsdsa_official
• Xx.com/RSDSA
• Facebookfacebook.com/RSDSA
• LinkedInlinkedin.com/company/rsdsa

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Reflex Sympathetic Dystrophy Syndrome Association