Restless Legs Syndrome Foundation
The Restless Legs Syndrome Foundation is a 501(c)(3) nonprofit that provides education, research funding, and patient support for people affected by Restless Legs Syndrome through publications, a network of 17 certified Quality Care Centers, and a research grant program.
- Company typePrivate
- Founded1992
- HeadquartersAustin, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Restless Legs Syndrome Foundation does
The Restless Legs Syndrome Foundation is a 501(c)(3) nonprofit organization incorporated in North Carolina in 1992 and headquartered in Austin, Texas since a 2014 relocation from Rochester, Minnesota. It is the only US patient organization dedicated specifically to Restless Legs Syndrome (RLS), serving three constituencies: patients and families seeking education and support, healthcare providers treating RLS, and researchers studying the disease. Its core offerings comprise educational publications (NightWalkers quarterly magazine, the RLS Medical Bulletin, brochures, guides, Medical Alert Cards, and Special Accommodations Cards), a monthly webinar series featuring RLS experts, a national and virtual support group network, an online healthcare provider directory, and the RLS Research Grant Program which has awarded over $2M across 50+ grants since inception. The RLS Quality Care Center (QCC) network — 17 certified centers across the United States, Switzerland, and Austria, hosted at institutions including Mayo Clinic, Stanford, Johns Hopkins, Yale, and Massachusetts General Hospital — forms the clinical backbone of the foundation's referral infrastructure, complemented by the National RLS Opioid Registry and a brain donation research program.
The foundation operates a community-led, event-driven go-to-market model rather than a technology product model. It earns revenue through $40/year individual memberships, individual donations, and grants; over 83% of funds are directed to programs (research, education, patient services, support groups). Its distribution relies on the rls.org website, the eFriends email newsletter, social media, the monthly webinar series, and annual advocacy events including RLS Hill Day in Washington DC. The organization is governed by a Board of Directors and operates with a small staff of approximately four people, led by Executive Director Karla Dzienkowski, RN, BSN (since January 2014). It holds Charity Navigator's 4-star rating, Candid (GuideStar) Platinum transparency seal, BBB Wise Giving Alliance accreditation, and the 2024 Top Rated Award from Charity Navigator.
The organization has no proprietary technology platform, app, API, or SDK. Technology is limited to standard web content delivery and Zoom-based webinars; all AI/ML capability is absent. International operations are confined to electronic delivery of NightWalkers Magazine and to two European QCC sites (Lugano, Switzerland and Innsbruck, Austria); no global entity claims are made. The foundation's competitive position rests on disease-specific content, a clinical referral network, and a 30-year accumulated research-grant track record rather than on technology moats.
Restless Legs Syndrome Foundation firmographics
Firmographics- Name
- Restless Legs Syndrome Foundation
- Legal name
- Restless Legs Syndrome Foundation, Inc.
- Website
- https://rls.org
- Company type
- Private
- Founded year
- 1992
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The Restless Legs Syndrome Foundation is a 501(c)(3) nonprofit that provides education, research funding, and patient support for people affected by Restless Legs Syndrome through publications, a network of 17 certified Quality Care Centers, and a research grant program.
- Ownership category
- akta.pro rank
Restless Legs Syndrome Foundation industry classification
Industry- Product category
- Patient Advocacy Nonprofit Services
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Health Services (8000)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
Keywords
Where Restless Legs Syndrome Foundation is headquartered
LocationHeadquarters
- HQ city
- Austin
- HQ country
- United States
- HQ region
- North America
Offices18 records
Markets served
Restless Legs Syndrome Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Others
Revenue model
- Membership Dues: Individual membership is available at $40 per year, providing access to NightWalkers Magazine, educational webinars, brochures and guides, medical alert cards, and special accommodations cards for travel.
- Individual Donations: The foundation receives funding support from individual donors in addition to membership fees.
- Grants: The foundation receives grant funding as part of its revenue support.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | Annual | Individual Membership - $40 per year |
Go-to-market motion2 records
Distribution channels3 records
Marketing channels7 records
Restless Legs Syndrome Foundation product offering
Product offeringCore offering
The Restless Legs Syndrome Foundation is a 501(c)(3) nonprofit that funds RLS research, delivers patient education, and connects patients with specialized care. Its core offerings include the NightWalkers Magazine, monthly expert-led webinars, downloadable publications and patient resource cards, a 17-center Quality Care Center network, a provider directory, support groups, and a research grant program that has awarded over $2M to date.
Product overview
The Restless Legs Syndrome Foundation operates as a single unified nonprofit offering rather than a platform-plus-modules architecture. The organization's portfolio consists of educational publications (NightWalkers Magazine, brochures, guides), the RLS Webinars monthly educational series, the RLS Quality Care Centers Network of certified healthcare providers, a Healthcare Provider Directory, the RLS Research Grant Program, support groups, and patient resources including Medical Alert Cards and Special Accommodations Cards. These offerings work together to provide comprehensive education, support, and healthcare access for RLS patients and their families.
Differentiator
Problem solved
Functional benefit
Products and services
- NightWalkers Magazine A quarterly magazine for members of the RLS community, highlighting the latest research advances and treatments for Restless Legs Syndrome.
- RLS Educational Webinars A monthly educational webinar series featuring RLS experts covering topics such as diagnosis, treatment, research, and living with RLS; archived recordings are available to members.
- RLS Publications Comprehensive publications including brochures, guides, the RLS Medical Bulletin, and symptom tracking tools for RLS patients and healthcare providers, reviewed and approved by the Scientific and Medical Advisory Board.
- RLS Quality Care Centers Network A network of 17 certified RLS Quality Care Centers staffed by leading RLS specialists providing expert care and specialized disease management for complex RLS cases across the US, Switzerland, and Austria.
- Healthcare Provider Directory An online directory of healthcare providers across the United States who have knowledge and experience treating Restless Legs Syndrome, searchable by state.
- RLS Research Grant Program A grant program that awards research funding to find better treatments and ultimately a cure for RLS, with over $2M awarded across 50+ grants since the foundation's inception.
- Support Groups Local and virtual support opportunities providing a safe space for patients and families to connect with others coping with Restless Legs Syndrome.
- Medical Alert Card A wallet-sized card listing basic medical information and medications that can exacerbate RLS symptoms, designed to be carried by patients in case of emergency.
- RLS Special Accommodations Card A travel resource explaining RLS and requesting accommodations such as aisle seating and permission to move about when necessary during flights and other travel.
Quantifiable outcome
- Over 83% of funds go directly to programs (research, education, patient services, support)
- +2 more outcomes
Companies that use Restless Legs Syndrome Foundation
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles2 records
Restless Legs Syndrome Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Restless Legs Syndrome Foundation partnerships and signals
Strategic signalScale indicators7 records
Recent moves6 records
Expansion highlights5 records
Restless Legs Syndrome Foundation competitors and assessment
Company assessmentDirect peers
- Foundation for Peripheral Neuropathy: Small disease-specific nonprofit funding research and patient education for peripheral neuropathy, with overlapping neurologic clinical specialists and similar advocacy/research-funding model. Comparable as a peer in scale and category-specific patient nonprofit operations.
- Tourette Association of America: Long-established disease-specific patient-advocacy nonprofit with similar structure (research grants, support groups, healthcare provider directory, magazine, membership model). Closely comparable in size, mission, funding streams, and operational design, making it a useful operational and fundraising benchmark.
- National Sleep Foundation: The largest US nonprofit dedicated to sleep health broadly, providing public education, professional training, and advocacy. It is the closest nonprofit peer to the RLS Foundation in category (sleep disorder nonprofit), audience (patients and clinicians), and funding model (memberships + donations). It competes for mindshare and donor dollars within sleep-related giving.
- American Sleep Apnea Association: Patient-focused nonprofit specifically serving sleep apnea patients with education, support communities, and advocacy. Directly comparable to the RLS Foundation in disease-specific scope, community-led model, support groups, and donor-funded mission in the sleep-disorder nonprofit category.
- Narcolepsy Network: Small patient-advocacy nonprofit for narcolepsy with comparable scale, mission (education, research support, patient community), and funding model (memberships/donations). It operates in an adjacent sleep-disorder niche and targets a similarly specialized patient population, making it a strong operational model peer.
Others
- Sleep Research Society: Research-focused scientific society that funds basic and clinical sleep science, including RLS-related work, and overlaps with the RLS Foundation's research grant program. Not a direct competitor but a closely related ecosystem participant in funding and shaping RLS science.
Broad incumbents
- American Academy of Sleep Medicine: The largest professional society for sleep medicine clinicians, with overlapping RLS clinical guidelines, continuing education, and provider directory assets. It operates at substantially larger scale across all sleep disorders and competes with the RLS Foundation for clinician mindshare and research-policy influence.
Regional players
- European Restless Legs Syndrome Study Group: Europe's primary RLS-focused clinical and research society, focused on European medical professionals and research collaborations. It is region-specific but covers the same disease as the RLS Foundation, with overlapping advisory boards and an overlapping international quality-care ecosystem.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks4 records
Key highlights6 records
Customer concentration
Restless Legs Syndrome Foundation social profiles
Digital presenceRestless Legs Syndrome Foundation compliance and trust
Trust signalCompliance4 records
Restless Legs Syndrome Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Restless Legs Syndrome Foundation leadership team
Management profileNumber of profiles
Profiles4 records
Restless Legs Syndrome Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Restless Legs Syndrome Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Restless Legs Syndrome Foundation
What does Restless Legs Syndrome Foundation do?
The Restless Legs Syndrome Foundation is a 501(c)(3) nonprofit that funds RLS research, delivers patient education, and connects patients with specialized care. Its core offerings include the NightWalkers Magazine, monthly expert-led webinars, downloadable publications and patient resource cards, a 17-center Quality Care Center network, a provider directory, support groups, and a research grant program that has awarded over $2M to date.
Is Restless Legs Syndrome Foundation a public or private company?
Restless Legs Syndrome Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Restless Legs Syndrome Foundation founded?
Restless Legs Syndrome Foundation was founded in 1992. It employs 1 to 10 people.
Where is Restless Legs Syndrome Foundation based?
Restless Legs Syndrome Foundation is headquartered in Austin, United States, in the North America region.
How does Restless Legs Syndrome Foundation make money?
Three revenue lines are on record. Membership Dues are the primary driver. The others are individual Donations and grants.
Who are Restless Legs Syndrome Foundation's main competitors?
Direct peers on record are Foundation for Peripheral Neuropathy, Tourette Association of America, National Sleep Foundation, American Sleep Apnea Association and Narcolepsy Network. Sleep Research Society is listed as an others. American Academy of Sleep Medicine is listed as a broad incumbent. European Restless Legs Syndrome Study Group is listed as a regional player.
Does Restless Legs Syndrome Foundation have an API?
No public API is recorded for Restless Legs Syndrome Foundation.
What industry is Restless Legs Syndrome Foundation in?
Restless Legs Syndrome Foundation's product category is Patient Advocacy Nonprofit Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8000.