Usher Syndrome Coalition

What Usher Syndrome Coalition does

The Usher Syndrome Coalition is a US-based 501(c)-style nonprofit patient advocacy organization headquartered in Westford, Massachusetts, dedicated to finding and supporting every individual and family affected by Usher syndrome, the most common genetic cause of combined deafness and blindness. It operates three core platform assets: the USH Trust, the largest international Usher syndrome contact database with 6,173 cumulative connections and 2,908 active participants across 85 countries; the Usher Syndrome Data Collection Program, a Rare-X-powered collaborative platform for global data sharing and analysis to accelerate treatments; and the annual USH Connections Conference, the largest global gathering of the Usher syndrome community, drawing 482 participants in 2024.

The organization serves three primary customer segments: individuals and families affected by Usher syndrome (community, education, mental health, and trial referral), Usher syndrome researchers (clinical trial enrollment, registry access, data sharing), and healthcare professionals serving the deafblind community (education, resources, conference participation). Its go-to-market is community-led and event-driven, anchored by the annual conference and the USH on Capitol Hill advocacy program, complemented by direct-to-consumer channels including the USH Blog, Grounded in Science newsletter, USH Talks video library, and social media presence across Facebook, Instagram, Blue Sky, YouTube, and LinkedIn.

The Coalition funds operations through individual donations, the recurring USH Visionaries monthly giving program, Walk4Hearing events, merchandise sales, and grants/sponsorships from pharmaceutical partners including Sepul Bio (Platinum Sponsor of USH2026), Eli Lilly/Akouos, ProQR, and research foundations. It holds GuideStar Platinum Transparency (2026) and NORD Platinum Member (2025) credentials and was instrumental in establishing Usher Syndrome Awareness Day on the third Saturday of September, which was entered into the US Congressional Record in 2015.

Name

Usher Syndrome Coalition

Legal name

Usher Syndrome Coalition

Website

https://usher-syndrome.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

The Usher Syndrome Coalition is a US nonprofit that operates the USH Trust registry (2,908 active participants across 85 countries) and the USH Data Collection Program to accelerate research, and hosts the annual USH Connections Conference for the global Usher syndrome community.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Human Rights Organizations (813311), Social Advocacy Organizations (8133)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Disability Rights & Accessibility Advocacy (BPAGAFAF)

Keywords

• Rare disease advocacy
• Patient registry
• Genetic disorder support
• Deaf-blind community
• Natural history study

Headquarters

HQ city

Westford

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 Fundraising: The Coalition receives donations from individuals and families affected by Usher syndrome, as well as supporters of the cause. They operate a donate page and various fundraising initiatives.
2. USH Visionaries Monthly Giving Program: Monthly donation program where supporters sign up to make recurring contributions to accelerate research by connecting the global Usher syndrome community.
3. Walk4Hearing: Walk events that raise funds while also building community awareness and engagement.
4. Shop: Merchandise shop selling items to support the organization.

Go-to-market motion3 records

Distribution channels3 records

Marketing channels9 records

Core offering

The Usher Syndrome Coalition is a nonprofit patient advocacy organization dedicated to the Usher syndrome community. It operates the USH Trust, a global patient registry and Data Collection Program, hosts the annual USH Connections Conference, and provides education, resources, and advocacy for individuals and families affected by Usher syndrome, the most common genetic cause of combined deafness and blindness.

Product overview

The Usher Syndrome Coalition operates as a nonprofit patient advocacy organization offering a unified platform of community resources and research tools. The core offerings include the USH Trust registry (the world's largest international Usher syndrome contact database), the Usher Syndrome Data Collection Program for global research data sharing, the annual USH Connections Conference (largest global gathering), USH Talks video library, and the USH Blog for community engagement. These products work together to connect the global Usher community, accelerate research, and provide information and support to individuals and families affected by Usher syndrome.

Differentiator

Problem solved

Functional benefit

Brands

• USH Trust: The largest international Usher syndrome contact database in the world, connecting patients with researchers and clinical trials.
• USH Connections Conference
• Usher Syndrome Awareness Day
• USH Visionaries
• USH Champions
• USH DCP (Data Collection Program)

Products and services

• USH Trust Registry A global patient registry and data collection initiative for individuals with Usher syndrome. It captures health, genetic, and quality-of-life information to support researchers studying treatments and cures for the condition.
• USH Data Collection Program A natural history study program that collects longitudinal data from USH Trust participants to characterize disease progression and inform clinical research and trial design.
• USH Connections Conference An annual in-person conference bringing together individuals with Usher syndrome, families, researchers, clinicians, and industry partners for educational programming, research updates, and community building.
• USH Blue Store Branded merchandise including USH Blue clothing and accessories sold to support the Coalition's mission and raise awareness.

Quantifiable outcome

• The USH Trust has facilitated connections with 6,173 individuals and 2,908 registered participants across 85 countries
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Twelve partnerships are on record, tiered core, minor and flagship.

• Eli Lilly and CompanycoreStrategic or Co-development Partner · 10 December 2025The Usher Syndrome Coalition partnered with Eli Lilly and Company and Akouos to support clinical trial enrollment for a potential therapy for USH3A-related hearing loss.
• Sepul Bio (USH2A Partnership)coreStrategic or Co-development Partner · 16 December 2024Partnership to support enrollment in the LUNA clinical trial for ultevursen, a potential mRNA therapy for USH2A-mediated retinitis pigmentosa.
• ProQRcoreStrategic or Co-development Partner · 31 January 2022Partnership to provide outreach and education for ProQR's clinical trial for a potential therapy for USH2A mediated retinitis pigmentosa. The trial is now paused.
• CUREUsherminorGTM or Marketing Partner · 17 September 2021Partnership with CUREUsher of the United Kingdom on a collaborative awareness initiative to harness the energies of the USH community and clinicians.
• Sepul BioflagshipStrategic or Co-development PartnerSepul Bio is the Platinum Sponsor for USH2026 and has partnered with the Coalition to support enrollment in the LUNA clinical trial, a Phase 2b study testing ultevursen, a potential RNA therapy for USH2A-mediated retinitis pigmentosa.
• Usher Syndrome SocietyminorGTM or Marketing PartnerUSH Partner organization collaborating on awareness initiatives including the 'Shine A Light On Usher Syndrome' portrait exhibit.
• Ava's VoiceminorGTM or Marketing PartnerUSH Partner organization that empowers youth with Usher syndrome.
• Ush One SeeminorGTM or Marketing PartnerUSH Partner organization working to support the Usher syndrome community.
• Usher Kids UKminorGTM or Marketing PartnerUSH Partner organization bringing together families of children with Usher syndrome in the United Kingdom.
• Usher 1F CollaborativeminorGTM or Marketing PartnerUSH Partner organization funding medical research to find a cure for the vision loss of Usher syndrome type 1F.
• Hear See HopeminorGTM or Marketing PartnerUSH Partner organization that has been funding Usher syndrome research for 15 years.
• Critical Path InstitutecoreStrategic or Co-development PartnerThe Critical Path Institute awarded a $249,719 grant to Odylia Therapeutics to advance gene therapy for USH1C-associated vision loss, supporting research initiatives relevant to the USH community.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• CUREUsher: UK-based organization focused on Usher syndrome awareness and clinician/community engagement. Direct disease-specific peer that collaborated with the Coalition on a joint awareness initiative in 2021.
• Foundation Fighting Blindness: US nonprofit funding retinal degenerative disease research and supporting patients, including those with Usher syndrome–related retinitis pigmentosa. Comparable in disease-specific advocacy, research funding, and patient-registry operations for inherited vision loss.
• Hear See Hope: US nonprofit that has funded Usher syndrome research for 15+ years and is a Coalition USH Partner. Direct peer in disease-specific research funding and family/community support for Usher syndrome.
• Hearing Loss Association of America (HLAA): US advocacy organization for people with hearing loss, including Walk4Hearing — a program the Coalition partners with directly. Comparable as a hearing-loss nonprofit with advocacy, walk-based fundraising, and community-engagement channels.
• Usher 1F Collaborative: US nonprofit funding research toward a cure for Usher syndrome type 1F. Listed as a Coalition USH Partner organization. Comparable as a small, gene-specific Usher advocacy and research-funding nonprofit.
• Global Genes: Alliance of rare disease advocacy organizations. The Usher Syndrome Coalition is a member of its Global Advocacy Alliance, making Global Genes a direct peer in rare-disease community-building, education, and advocacy programming.
• Usher Syndrome Society: Separate US nonprofit focused on Usher syndrome awareness and the 'Shine A Light On Usher Syndrome' portrait exhibit. Direct peer in disease-specific patient advocacy and coalition-style community programming.

Broad incumbents

• National Organization for Rare Disorders (NORD): Leading US rare disease umbrella organization of which the Usher Syndrome Coalition is a Platinum Member. Directly comparable as a nonprofit advocacy and patient registry operator serving the same rare-disease community with awareness, policy, and research-enablement missions.
• EURORDIS - Rare Diseases Europe: European federation of rare disease patient organizations; the Coalition is a member. Highly comparable mission around rare-disease patient empowerment, registries, and policy advocacy, but operating at a continental vs. disease-specific level.

Regional players

• Usher Kids UK: UK-based organization supporting families of children with Usher syndrome. A Coalition USH Partner; comparable mission and programs but geographically focused on the UK rather than globally.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/ushercoalition
• YouTubeyoutube.com/channel/UCBC3FOVhuicDRDufeXKv15A
• Facebookfacebook.com/UsherSyndromeCoalition
• LinkedInlinkedin.com/company/usher-syndrome-coalition
• Instagraminstagram.com/ushercoalition

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Usher Syndrome Coalition