irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $167KMAINTAIN INFORMATIVE WEBSITE, PROVIDE MEDICATION ASSISTANCE, PUBLISH/MAIL NEWSLETTERS. SUPPORT LOCAL PATIENT MEETINGS. ANNUAL CONFERENCE FOR PATIENTS.
named programs · 4 · from sources
What they call their work
Annual Conference
Dual-track educational event for patients, families, and clinicians featuring expert speakers, support sessions, and networking opportunities, held annually in different U.S. cities.
Medication Assistance Program
Provides support to patients accessing treatments for Wilson disease, including chelation therapy and zinc-based medications.
WDA Ambassador Program
New initiative launching in 2026 to expand outreach and peer support within the Wilson disease community.
Wilson Disease Patient Registry
Natural history study following Wilson disease patients for up to ten years through annual evaluations by specialists in hepatology, neurology, and psychology to improve care and inform research.
activities · 8 groups
What they do
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Patient and Researcher Conferences 2 activities
- Hosts annual dual-track conference for patients and cliniciansOrganizes an annual conference with separate programming for patients/families and medical professionals, co-hosted with the Northwestern Medicine Wilson Disease Center of Excellence, offering subsidized registration and travel scholarships to increase accessibility.
- Organizes externally-led Patient-Focused Drug Development (EL-PFDD) meetingsPlans and leads daylong virtual EL-PFDD meetings accessible globally via live webcast to inform the FDA, drug developers, and healthcare providers about patient challenges in Wilson disease.
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Medical Research & Education Dissemination 1 activity
- Conducts patient-focused research and input initiativesOrganizes annual focus groups ("Partners in Progress") and produces a Voice of the Patient Report from EL-PFDD meetings to capture lived experiences and inform research, clinical trial design, and FDA engagement.
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Genetic and Neurological Disease Research Funding 1 activity
- Funds critical research on Wilson diseaseFinances scientific studies and research initiatives related to Wilson disease through donor-supported programs, including funding for research via general donor contributions.
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Peer-Led Mental Health Support Groups 1 activity
- Hosts virtual support groups and community eventsConducts quarterly virtual support group meetings via Zoom for patients and caregivers, provides access instructions in advance, and organizes community-building events such as a sponsored architecture cruise during the annual conference.
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Disease-Specific Clinical & Patient Education 1 activity
- Produces and distributes educational materials for patients and medical professionalsCreates and shares a range of educational resources including a patient handbook, diagnostic algorithm tools, clinical management guides, newsletters (e.g., Copper Connection), cookbooks, and general informational materials to support patients and healthcare providers.
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Familial Support for Rare Genetic Conditions 1 activity
- Provides personal support and resource connection for affected familiesOffers ongoing emotional support, guidance, and resource linkage through trained volunteers who maintain regular contact with families affected by Wilson disease.
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Rare Genetic Disease Research and Advocacy 1 activity
- Sponsors and operates the Wilson Disease Patient RegistryManages a natural history study that follows patients with Wilson disease for up to ten years through annual specialist evaluations in hepatology, neurology, and psychology to improve diagnosis, management, and treatment; supports research through registry data.
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Uncategorized 1 activity
- Advances Wilson disease awareness through advocacy campaignsOrganized the inaugural Wilson Disease Awareness Day on December 6, 2024, to promote public and professional awareness of the disease.
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financials · form 990 · fy2024
revenue
Total revenue$785K
Contributions & grants$760K97%
Program service revenue$8K1%
Investment income$17K2%
Other revenue$0
expenses
Total expenses$672K
Program expenses90%
Admin / overhead6%
Fundraising4%
Salaries & benefits$4K
Grants paid out$0
Largest expense lineProfessional Fees
balance sheet
Total assets$616K
Cash$477K
Investments$103K
Liabilities$622
Net assets$616K
Liquid reserves10.3 mo
4 years on record · 2020–2024 · YoY revenue +232.5%
leadership · form 990 part vii · fy2024
Who runs it
board members · 7
- Alice Williams — Director
- Carly Abramson — Director
- Edward Tabor — Director
- Jean Perog — Director
- Lana Maria Escamilla — Director
- Rachel Albert — Director
- Steve Walsh — Director
relationships · 16
Who they work with
- ClinicalTrials.gov Network — Directs patients to ClinicalTrials.gov as a comprehensive source for global clinical trial listings on Wilson disease.
- FDA Government — Collaborates with the FDA through the Externally-Led Patient-Focused Drug Development meeting to share patient insights and inform regulatory decision-making.
- Hong Kong Wilson’s Disease Association Partner — Collaborated on promotional materials for Wilson Disease Awareness Day.
- NORD Network — Member of the National Organization for Rare Disorders (NORD) network.
- NORD Network — Member of the National Organization for Rare Disorders (NORD).
- NORD Network — Member of the National Organization for Rare Disorders network.
- NORD Partner — Provides educational resources to WDA members, including the guide "Rare Disease Drug Development: What Patients and Advocates Need to Know."
- National Organization for Rare Disorders Network — Member of NORD, as indicated by the NORD membership logo on the website.
- Northwestern Medicine Wilson Disease Center of Excellence Partner — Co-hosts the WDA Annual Conference and collaborates on patient and clinician education initiatives.
- Orphalan SA Partner — Supports research with the University of Birmingham to validate the Wilson Disease Treatment Experience Questionnaire (WD-TEQ).
- Prime Medicine Partner — Collaborates by sharing information about the Prime-0211 pre-screening study for adults with Wilson disease.
- Rare Disease Hong Kong Partner — Supported Hong Kong’s promotional campaign for Wilson Disease Awareness Day.
- Rare Diseases International Partner — Supported Hong Kong’s promotional campaign for Wilson Disease Awareness Day.
- Ultragenyx Partner — Partners by disseminating updates on the CYPRUS2+ clinical study of UX701, an investigational gene therapy for Wilson disease.
- University of Birmingham Partner — Collaborates on a study to validate the Wilson Disease Treatment Experience Questionnaire (WD-TEQ), inviting global participation from individuals with Wilson disease.
- Wilson Disease Global Alliance Network — Member organization that includes over 20 Wilson disease patient advocacy groups worldwide, collaborating to raise global awareness.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Clinician and Public Awareness Through Narrative and Targeted Educationmethodology: awareness_through_narrative_and_educationBy disseminating patient stories and offering dedicated clinician education, the organization improves early diagnosis and treatment of Wilson disease, because narrative engagement increases provider recognition of atypical presentations and increases diagnostic vigilance among both medical professionals and the public.
- Curated Research and Clinical Trial Disseminationmethodology: curated_clinical_trial_disseminationBy reviewing and sharing information about clinical trials, studies, and surveys through expert oversight, the organization increases community participation in research, because pre-vetted, credible opportunities reduce barriers to access and build trust in scientific engagement.
- Patient Registry for Research Advancementmethodology: research_infrastructure_supportBy maintaining a patient registry to collect and share clinical data, the organization accelerates research on Wilson disease, because centralized, real-world patient data enables researchers to identify patterns, recruit for studies, and develop targeted therapies more efficiently.
- Patient and Caregiver Empowerment Through Education and Peer Supportmethodology: empowerment_through_education_and_peer_supportBy providing curated educational resources, clinical tools, and structured peer-to-peer networks—including virtual access and trained support volunteers—the organization improves patient engagement, disease management, and quality of life, because empowered individuals with access to knowledge and lived-experience guidance are better equipped to navigate diagnosis, treatment, and emotional challenges.
- Patient-Centered Advocacy and Drug Developmentmethodology: patient-centered_drug_developmentBy centering patient, family, and caregiver lived experiences in drug development discussions, the Wilson Disease Association influences treatment research and policy decisions at regulatory and clinical levels, because authentic patient narratives reveal unmet needs and real-world treatment impacts that drive more responsive innovation and approval pathways.