Opmd Association Non-profit For Oculopharyngeal Muscular Dystrophy

What Opmd Association Non-profit For Oculopharyngeal Muscular Dystrophy does

The OPMD Association is a non-profit patient advocacy organization founded in 2022 and headquartered in San Antonio, Texas. It is dedicated exclusively to the Oculopharyngeal Muscular Dystrophy (OPMD) community — a rare inherited neuromuscular disorder characterized by progressive ptosis, dysphagia, and limb-girdle muscle weakness. The organization's stated mission is to advocate for affected individuals by delivering education, resources, and programs, and by forging research partnerships aimed at advancing understanding and treatment of the disease.

Operationally, the entity operates with a very small footprint of 1-10 employees, consistent with an early-stage, volunteer-supported rare disease advocacy group. Its business model is characteristic of a 501(c)-style non-profit: services to the patient community are provided free of charge, and financial support is presumably sourced from individual donations, community fundraising, and research-aligned grants rather than commercial revenue. No pricing model, paying customers, or commercial product lines are disclosed in the available data.

The underlying technology and product surface are not described in the source material — the organization's website returned only a loading/verification page during data collection, so no substantive product, platform, or technical architecture could be confirmed. The organization is differentiated by the narrowness of its disease focus; OPMD is a sufficiently rare condition (predominantly affecting individuals of French-Canadian, Bukharan Jewish, and certain other ancestral backgrounds) that few if any competing advocacy organizations exist with equivalent single-disease specialization.

Name

Opmd Association Non-profit For Oculopharyngeal Muscular Dystrophy

Website

https://opmd.org

Company type

Private

Founded year

2022

Operating status

Operating

Headcount range

1–10 employees

Short description

The OPMD Association is a small non-profit founded in 2022 in San Antonio, Texas, dedicated to advocating for individuals affected by Oculopharyngeal Muscular Dystrophy through education, resources, programs, and research partnerships.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro industry

PRIMARYHLAKAIAO

Neurogenetics & Rare Neurologic Diseases

Healthcare & Life Sciences/Specialist Medical Practice/Neurology

Keywords

• Rare disease advocacy
• Muscular dystrophy support
• Patient education resources
• Non-profit healthcare
• Disease research partnerships

Headquarters

HQ city

San Antonio

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Core offering

The OPMD Association is a non-profit organization that advocates for the Oculopharyngeal Muscular Dystrophy (OPMD) community by providing education, resources, programs, and research partnerships. It serves as a dedicated support and advocacy body for individuals and families affected by this rare neuromuscular disease.

Differentiator

Problem solved

Functional benefit

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves1 record

Broad incumbents

• AANEM (American Association of Neuromuscular & Electrodiagnostic Medicine): A medical-professional society focused on neuromuscular disease diagnosis and treatment. While a clinician membership organization rather than a patient advocacy group, it is a key stakeholder/funder in the neuromuscular advocacy ecosystem that OPMD Association engages with for research and clinical partnerships.
• National Organization for Rare Disorders (NORD): A large umbrella rare-disease advocacy organization operating across thousands of conditions. While not specific to OPMD or muscular dystrophy, NORD is a key ecosystem player for policy advocacy, patient registry infrastructure, and research grant programs that OPMD Association may rely on or partner with.
• Global Genes: A broader rare-disease advocacy and patient-support organization that convenes and resources many rare-disease patient groups, including small muscular dystrophy communities. Functions as an enabling/umbrella peer and potential capacity-building partner.

Direct peers

• Friedreich's Ataxia Research Alliance (FARA): A rare-disease patient advocacy and research non-profit focused on Friedreich's ataxia. Highly comparable model combining patient support, research grantmaking, and biotech partnership development for an ultra-rare genetic neurological disease.
• Parent Project Muscular Dystrophy: A disease-specific muscular dystrophy advocacy non-profit (focused on Duchenne) with a comparable model of patient-driven research funding, clinical-trial engagement, and family support—structurally analogous to how OPMD Association aims to operate for the OPMD community.
• Charcot-Marie-Tooth Association: Advocacy and research organization for Charcot-Marie-Tooth disease, a rare inherited neuromuscular disorder. Comparable single-disease advocacy structure serving a small patient community with similar programs and funding model constraints.
• Myotonic Dystrophy Foundation: A single-disease advocacy and research foundation for myotonic dystrophy. Highly comparable in scope: rare muscular dystrophy, similar pillars of research funding, family services, and clinician engagement.
• Muscular Dystrophy Association: The largest U.S. advocacy and research organization serving patients across multiple neuromuscular diseases, including muscular dystrophies that overlap with OPMD. Operates a similar multi-pillar model (research, care, advocacy, education) and directly competes for OPMD-family donations and engagement.
• Cure SMA: A rare neuromuscular disease advocacy non-profit focused on spinal muscular atrophy. Demonstrates the rare-neuromuscular advocacy operating model that OPMD Association follows, including how to evolve into a powerful research-funding entity once therapies enter the pipeline.
• FSHD Society: Patient advocacy organization dedicated to facioscapulohumeral muscular dystrophy, another specific muscular dystrophy. Closely comparable operating model: dedicated research programs, education, and patient support for a single rare neuromuscular disease.

Market position

Strengths3 records

Weaknesses4 records

Competitive moat2 records

Key risks5 records

Key highlights4 records

Customer concentration

• LinkedInlinkedin.com/company/opmd-association-non-profit-for-oculopharyngeal-muscular-dystrophy

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 Opmd Association Non-profit For Oculopharyngeal Muscular Dystrophy