Wilson Disease Association
Wilson Disease Association is a 501(c)(3) nonprofit patient advocacy organization that provides support, education, and research funding for patients, caregivers, and medical professionals affected by Wilson disease. It operates a 10-year Patient Registry, peer-led support groups, and a Centers of Excellence network.
- Company typePrivate
- Founded1989
- HeadquartersNew York, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What Wilson Disease Association does
Wilson Disease Association (WDA) is a Section 501(c)(3) nonprofit patient advocacy organization founded in 1983 (EIN 16-1154397), headquartered in New York, NY, with a 7-person staff. The organization serves the Wilson disease community — a rare genetic disorder causing copper accumulation — across three primary segments: diagnosed patients, caregivers and family members, and medical professionals (hepatologists, neurologists, gastroenterologists). WDA's core offerings include peer-led virtual support group meetings (quarterly, facilitated by licensed social workers), a 10-year natural history Patient Registry Study conducted in collaboration with medical experts, the Copper Conscious Cookbook (a $12.99 dietary guide sold on Amazon), the Copper Connection newsletter, annual conferences (Chicago 2026), Spring Support Symposiums (Ann Arbor 2026), and a network of designated Centers of Excellence across the United States.
WDA's revenue model is donation-driven, with primary funding from individual donations, corporate matching gifts, and bequests, supplemented by smaller streams including cookbook sales, event registration fees ($20 patient/caregiver, $150 professional), peer-to-peer fundraising through GiveButter and Facebook Fundraisers, and pharmaceutical sponsorships (Eton, Orphalan, Ultragenyx, Monopar). The organization does not develop proprietary technology; its technology stack is limited to a website built by Digital Dialogue, Inc. and Zoom for virtual programming. Distribution is primarily self-serve via the website, with in-person events at medical conference centers and cookbook distribution through Amazon.
Strategically, WDA has expanded its footprint in 2024-2026 through the formation of the International Wilson Disease Community (20+ advocacy organizations globally), the inaugural Wilson Disease Awareness Day (December 6, 2024), and partnerships with gene therapy developers (Ultragenyx UX701, Vivet VTX-801, Prime Medicine) positioning the organization as a key clinical trial recruitment and patient engagement channel. The 7-employee team is constrained, but the organization's 40+ year brand, NORD membership, and Centers of Excellence network create significant barriers to replacement in the U.S. Wilson disease community.
Wilson Disease Association firmographics
Firmographics- Name
- Wilson Disease Association
- Legal name
- Wilson Disease Association
- Website
- https://wilsonsdisease.org
- Company type
- Private
- Founded year
- 1989
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Wilson Disease Association is a 501(c)(3) nonprofit patient advocacy organization that provides support, education, and research funding for patients, caregivers, and medical professionals affected by Wilson disease. It operates a 10-year Patient Registry, peer-led support groups, and a Centers of Excellence network.
- Ownership category
- akta.pro rank
Wilson Disease Association industry classification
Industry- Product category
- Rare Disease Patient Advocacy Services
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Membership Organizations (8600)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Wilson Disease Association is headquartered
LocationHeadquarters
- HQ city
- New York
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Wilson Disease Association business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Contributions: The primary revenue source comes from individual donations, corporate matching gifts, and bequests. The organization is a 501(c)(3) nonprofit (EIN 16-1154397) that relies on charitable contributions to fund operations, research, and patient support programs.
- Fundraising Events: WDA conducts peer-to-peer fundraisers through platforms like GiveButter and Facebook Fundraisers, as well as organizing direct fundraising campaigns for specific initiatives like the Patient Registry.
- Product Sales: Revenue from sales of the Copper Conscious Cookbook at $12.99 on Amazon, a guidebook with recipes for eating well with Wilson disease.
- Event Registration Fees: Registration fees for professional events including the Spring Support Symposium ($150 for healthcare professionals) and Annual Conference CME sessions.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | One time | Patient/Caregiver Event Registration |
| Subscription | One time | Professional Event Registration |
| One time/ perpetual license | One time | Copper Conscious Cookbook |
Go-to-market motion1 record
Distribution channels4 records
Marketing channels8 records
Wilson Disease Association product offering
Product offeringCore offering
The Wilson Disease Association is a nonprofit patient advocacy organization that provides support, education, and resources for individuals affected by Wilson disease, a rare inherited copper-accumulation disorder. Its core offerings include patient and caregiver support groups, educational publications such as the Copper Conscious Cookbook and Copper Connection newsletter, the 10-year Wilson Disease Patient Registry natural history study, and annual educational events (Annual Conference and Spring Support Symposium). Services are delivered largely free of charge to patients and are funded through donations, fundraising events, and limited product and event registration fees.
Product overview
Wilson Disease Association is a nonprofit organization (Section 501(c)(3)) that does not offer a traditional technology product or software platform. Instead, the organization provides a portfolio of patient support services and educational resources for individuals affected by Wilson disease, an inherited disorder that causes copper accumulation in the body. The main offerings include: the Copper Conscious Cookbook (a dietary guidebook available on Amazon), the Wilson Disease Patient Registry Study (a 10-year natural history research program), peer-led virtual support group meetings, the Copper Connection newsletter, and annual conferences/symposia. These services are provided at no cost or low cost to patients and are funded through donations.
Differentiator
Problem solved
Functional benefit
Products and services
- Copper Conscious Cookbook A guidebook with recipes for eating well with Wilson disease, featuring copper content charts, 20 kitchen-tested recipes with nutrition information, snack and beverage ideas, dining out strategies, and expert guidance from registered dietitians at Wilson Disease Centers of Excellence. Sold for $12.99 on Amazon and targeted at Wilson disease patients and their families.
- Wilson Disease Patient Registry Study A natural history study that follows patients with Wilson disease for up to ten years. Patients are seen annually by top experts in hepatology, neurology, and psychology, with the goal of improving patient care and gathering data that can help lead to better diagnosis, management, and treatment. Targeted at diagnosed Wilson disease patients.
- Peer-Led Virtual Support Group Meetings Quarterly virtual support group meetings for Wilson disease patients and caregivers, facilitated by Carly Albinder, LCSW, OSW-C. Meetings are held in English with translation services available. Targeted at patients and caregivers seeking peer support.
- WDA Annual Conference Annual educational conference bringing together Wilson disease patients, caregivers, and medical professionals for multi-day programming including patient and family sessions plus CME-accredited content. The 2026 conference is scheduled for September 25-26, 2026 in Chicago, Illinois at Northwestern Memorial Hospital's Feinberg Pavilion Conference Center.
- Spring Support Symposium A full-day educational symposium featuring presentations from Wilson Disease Center of Excellence teams, designed to bring patients and caregivers together as a community. Professional registration is $150 for healthcare professionals, industry representatives, and researchers; $20 for patients, caregivers, and those over 18; free for children under 18.
- Copper Connection Newsletter Regular newsletter providing news, updates, research highlights, and educational content for the Wilson disease community, with authored contributions from WDA leadership. Targeted at patients, caregivers, and medical professionals.
Companies that use Wilson Disease Association
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles3 records
Wilson Disease Association technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Wilson Disease Association partnerships and signals
Strategic signalPartnerships
Eleven partnerships are on record, tiered core and minor.
- University of Michigan Wilson Disease Center of ExcellencecoreThe University of Michigan Wilson Disease Center of Excellence team presents at WDA events including the Spring Support Symposium. This partnership provides expert medical leadership and clinical expertise to WDA programs and patient education initiatives.
- Eton PharmaceuticalscoreEton Pharmaceuticals (manufacturer of Galzin - zinc acetate) participates in WDA Round Table sessions at symposiums, providing information about medications and access programs for Wilson disease patients.
- OrphalancoreOrphalan (manufacturer of Cuvrior - trientine tetrahydrochloride) sponsors WDA events and participates in educational round tables, providing resources on Wilson disease medications.
- UltragenyxcoreUltragenyx is sponsoring WDA events and developing UX701 gene therapy for Wilson disease. WDA posts clinical trial information and community updates from Ultragenyx about the Cyprus2+ study.
- ANOVO (Specialty Pharmacy)minorANOVO specialty pharmacy participates in WDA Round Table sessions to discuss medication access and distribution for Wilson disease treatments including Galzin.
- PANTHERx Rare (Specialty Pharmacy)minorPANTHERx Rare specialty pharmacy participates in WDA events to discuss how specialty pharmacies support Wilson disease patients.
- MAP InternationalcoreOrphalan partners with MAP International and WDA to provide life-changing medicine to underserved communities, demonstrating WDA's role in global medication access initiatives.
- International Wilson Disease CommunitycoreInternational coalition of 20+ Wilson disease patient advocacy organizations around the world, united in the goal of raising awareness for Wilson disease. Each country or region advocates for issues relevant to their patients and families while sharing the common goal of awareness.
- Prime MedicinecorePrime Medicine is conducting the Prime-0211 pre-screening study for Wilson disease gene editing research. WDA posts information about participation in this study.
- Vivet TherapeuticscoreVivet Therapeutics was conducting the VTX-801 gene therapy clinical trial for Wilson disease. WDA shared information about trial participation. Vivet terminated the trial in October 2024 after infusing four patients at two dosing levels.
- Digital Dialogue, IncminorWebsite design and development partner responsible for the Wilson Disease Association website.
Scale indicators3 records
Recent moves6 records
Expansion highlights6 records
Wilson Disease Association competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases in the US. WDA is a NORD member organization and operates at a similar patient-advocacy model but focused on a single disease, while NORD covers 7,000+ rare conditions.
- Cystic Fibrosis Foundation: Large rare disease advocacy nonprofit combining patient support, accredited care centers, and venture philanthropy drug development. The reference model for how a rare-disease patient organization can fund and accelerate therapy development.
- American Liver Foundation: National nonprofit addressing all liver diseases, including Wilson disease as a hepatic indication. Operates a broader patient support, education, and research funding model that overlaps with WDA's hepatology-focused programming.
Direct peers
- National Fabry Disease Foundation: Patient advocacy nonprofit for Fabry disease, another ultra-rare genetic metabolic disorder. Mirrors WDA's combination of patient support, registry research, and partnership with enzyme-replacement and gene therapy developers.
- Children's Liver Association for Support Services: Pediatric liver disease patient advocacy nonprofit. Highly comparable disease-overlap (Wilson disease has pediatric onset), patient-education focus, and small-team operating model.
- Alpha-1 Foundation: Patient advocacy nonprofit for alpha-1 antitrypsin deficiency, another rare genetic metabolic disease. Operates a similar model of patient support, disease-specific research funding, Centers of Excellence, and pharma partnerships, with comparable staffing scale.
- Hereditary Hemorrhagic Telangiectasia Foundation International: Small patient advocacy nonprofit for an ultra-rare genetic disorder. Highly comparable in scale (small staff), model (patient support, Centers of Excellence, disease-specific research), and pharma engagement.
- Acid Maltase Deficiency Association (Pompe disease): Small patient-run advocacy nonprofit for a rare inherited metabolic disease. Closely aligned operating model: virtual support groups, patient registry, conference, pharma partnerships, and under-10-person team.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
Wilson Disease Association social profiles
Digital presenceWilson Disease Association compliance and trust
Trust signalCompliance1 record
Wilson Disease Association financial estimates
Financial estimateRevenue estimate
Valuation estimate
Wilson Disease Association leadership team
Management profileNumber of profiles
Profiles5 records
Wilson Disease Association funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Wilson Disease Association 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 Wilson Disease Association
What does Wilson Disease Association do?
The Wilson Disease Association is a nonprofit patient advocacy organization that provides support, education, and resources for individuals affected by Wilson disease, a rare inherited copper-accumulation disorder. Its core offerings include patient and caregiver support groups, educational publications such as the Copper Conscious Cookbook and Copper Connection newsletter, the 10-year Wilson Disease Patient Registry natural history study, and annual educational events (Annual Conference and Spring Support Symposium). Services are delivered largely free of charge to patients and are funded through donations, fundraising events, and limited product and event registration fees.
Is Wilson Disease Association a public or private company?
Wilson Disease Association is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Wilson Disease Association founded?
Wilson Disease Association was founded in 1989. It employs 1 to 10 people.
Where is Wilson Disease Association based?
Wilson Disease Association is headquartered in New York, United States, in the North America region.
How does Wilson Disease Association make money?
Four revenue lines are on record. Donations and Contributions are the primary driver. The others are fundraising Events, product Sales and event Registration Fees.
Who are Wilson Disease Association's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), Cystic Fibrosis Foundation and American Liver Foundation. Direct peers are National Fabry Disease Foundation, Children's Liver Association for Support Services, Alpha-1 Foundation, Hereditary Hemorrhagic Telangiectasia Foundation International and Acid Maltase Deficiency Association (Pompe disease).
Does Wilson Disease Association have an API?
No public API is recorded for Wilson Disease Association.
What industry is Wilson Disease Association in?
Wilson Disease Association's product category is Rare Disease Patient Advocacy Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8600.