Myositis Support and Understanding Association

What Myositis Support and Understanding Association does

Myositis Support and Understanding Association (MSU) is an all-volunteer, patient-led 501(c)(3) nonprofit organization founded in 2015 and headquartered in Lincoln, Delaware, that delivers support, education, financial assistance, advocacy, and patient-led research services to individuals affected by myositis and related inflammatory myopathies. The organization serves three primary constituencies: diagnosed myositis patients across the major subtypes (dermatomyositis, polymyositis, inclusion body myositis, immune-mediated necrotizing myopathy, antisynthetase syndrome, juvenile myositis), care partners and family members, and the healthcare providers who treat them. Programs are free at the point of use and include the Inspire-hosted peer support community, an expert-led video and webinar library, a Financial Assistance Program for U.S. residents covering emergency household expenses and medical bills, a clinical trial matching service (Antidote Technologies), the "Right Now" patient-led research hub, the Yale IBM Registry, and an Exercise In Place program, alongside new 2025 launch of Myositis Patient Connect powered by Polygon Health.

The underlying technology stack is an aggregation of third-party community platforms — a WordPress-based website, Zoom for synchronous video support groups, Clubhouse for audio community rooms, Inspire for forum-based peer connection, and Polygon Health's Myositis Patient Connect — rather than any proprietary system. There is no AI/ML capability disclosed; differentiation is sourced from the patient-led content library, the rare-disease community depth, and formal recognition (NORD Platinum 2025, GuideStar Platinum, GreatNonprofits 2024 Top-Rated, Global Genes founding alliance member).

The business model is donation- and grant-funded. MSU generates no fee revenue from members (membership is free), relying instead on individual donations, fundraising events such as the Myositis Empower Walk and the annual Moon Walk, and corporate sponsorships from pharmaceutical and healthcare companies (Novartis, Argenx, Priovant, Abcurro, IV Solutions Rx, with additional named sponsors Cabaletta Bio and Nkarta Therapeutics referenced in ownership commentary). A partnership with IndeeLift commits up to $5M in research donations tied to lift device sales. The organization is headquartered at a single Delaware address but operates virtually with no paid staff, distributing all services through digital channels.

Name

Myositis Support and Understanding Association

Legal name

Myositis Support and Understanding Association

Website

https://understandingmyositis.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

Myositis Support and Understanding (MSU) is an all-volunteer, patient-led 501(c)(3) nonprofit that provides free support, education, financial assistance, advocacy, and patient-led research services to individuals living with myositis, their care partners, and treating healthcare providers.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Social Assistance (624)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Myositis patient support
• Rare disease advocacy
• Patient education resources
• Nonprofit health organization
• Caregiver support services

Headquarters

HQ city

Lincoln

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Operations, Marketing or Sales, Technology or R&D, Personnel, Others

Revenue model

1. Donations and Fundraising: MSU is funded through charitable donations from individuals, sponsors, and fundraising events such as the Myositis Empower Walk and the annual Moon Walk event. The 2026 Moon Walk raised over $7000 from scooter races alone.
2. Corporate Sponsorships: Pharmaceutical companies and healthcare organizations sponsor MSU through grants and event support. Current sponsors include Abcurro, Argenx, IV Solutions Rx, Priovant, and Novartis.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels10 records

Core offering

MSU is an all-volunteer, patient-led 501(c)(3) nonprofit that delivers free support, education, financial assistance, advocacy, and patient-led research for individuals affected by myositis and their caregivers. The portfolio includes virtual support groups on Inspire, Zoom, and Clubhouse, expert-led educational webinars, a Patient Financial Assistance Program for U.S. residents, a patient advocacy program, an Exercise In Place movement program, clinical trial matching, and the newly launched Myositis Patient Connect community platform powered by Polygon Health.

Product overview

Myositis Support and Understanding (MSU) is a patient-centered, all-volunteer, virtual 501(c)(3) nonprofit organization that offers a portfolio of support, education, financial assistance, advocacy, and patient-led research programs. The core offerings include the Myositis Support Community on Inspire (online peer support), a Myositis Video Library of expert-led webinars, the Myositis Patient Financial Assistance Program, a Myositis Advocacy Program, and the 'Right Now' Research / Myositis Patient Led Research Hub. Additional services include a Clinical Trial Matching service (powered by Antidote), the Exercise In Place program, Clubhouse virtual support rooms, plasma donation programs, the Yale IBM Registry, and a Medical Binder with downloadable resources. The newly launched Myositis Patient Connect platform (powered by Polygon Health) serves as a next-generation unified community hub. Together these products form a comprehensive ecosystem addressing the emotional, educational, financial, and research needs of the myositis community.

Differentiator

Problem solved

Functional benefit

Brands

• Myositis Patient Connect powered by Polygon Health: A next-generation platform designed to bring the myositis community together, empowering patients to share experiences, connect with others, and access reliable information.
• Right Now Research
• Myositis Empower Walk
• Exercise In Place

Products and services

• Myositis Support Community (Inspire) A private online community where myositis patients and caregivers can connect, share experiences, and find peer support.
• Myositis Video Library and Webinars Expert-led educational video content covering types of myositis, clinical trials, exercise, mental health, caregiving, and patient opportunities.
• Myositis Patient Financial Assistance Program Covers certain emergency household expenses, medical bills, and mobility and assistive devices for U.S. residents living with myositis.
• Myositis Advocacy Program Patient advocacy initiatives that empower myositis patients to raise their voices for awareness, policy change, and research funding.
• 'Right Now' Patient-Led Research Hub Patient-led research arm that transforms patient insights into actionable research and clinical impact, including curated research directories and patient-led studies.
• Myositis Patient Connect (powered by Polygon Health) Next-generation community platform that brings the myositis community together, enabling patients to share experiences, connect with peers, and access reliable information in one place.
• Clinical Trial Matching Partnership with Antidote Technologies that helps patients find and match with relevant myositis clinical trials.
• Exercise In Place Program Movement and exercise program designed for myositis patients to maintain and build muscle safely under medical supervision.
• Clubhouse Support Rooms Free online Clubhouse support sessions including weekly Sunday sessions, men and women groups, young adults collective power hour, lung support, weight management, and movie club.
• PSG+MSU+You: Donate Plasma Program Plasma donation program enabling patients to contribute to medical research for myositis.
• Yale Inclusion Body Myositis Registry Patient registry for inclusion body myositis operated in partnership with Yale University for research data collection.
• Medical Binder and Myositis Downloads Editable medical binder and downloadable resources to help patients organize and track their medical history for appointments.
• IndeeLift HFL-400-FTS Assistive Device Program Partnership offering IndeeLift HFL-400-FTS assisted standing lift devices at a discount to myositis patients, with $200 donated per sale to myositis research up to $5M.

Quantifiable outcome

• Published research paper 'Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies' in Rheumatology journal
• +2 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Nine partnerships are on record, tiered minor and core.

• IV Solutions RxminorGTM or Marketing PartnerHosted the 'Standards of Care for Home Infusion' webinar with MSU, providing educational content about home infusion therapy for patients and caregivers.
• Dermatomyositis.comminorStrategic or Co-development PartnerPartner organization supporting MSU and the dermatomyositis community. Listed as a supporter during the 2026 Moon Walk.
• Polygon Health (Myositis Patient Connect)coreStrategic or Co-development PartnerPowers Myositis Patient Connect platform - a next-generation platform bringing the myositis community together, enabling patients to share experiences, connect with others, and access reliable information in one place.
• Antidote TechnologiescoreTechnology or IntegrationClinical trial matching platform partnered with MSU to help patients find and match with relevant clinical trials more easily.
• IndeeLiftminorGTM or Marketing PartnerPartnership providing IndeeLift HFL-400-FTS assistive devices to myositis patients with a discount program. For each machine sold in the community, IndeeLift donates $200 for Myositis Medical and Patient-Centered Research and Development, with a commitment of up to $5M.
• LiftSeatminorGTM or Marketing PartnerPowered toilet lift manufacturer offering $100 discount on accessories to MSU members. Referenced as recommended assistive device for myositis patients.
• GoodshopminorChannel Partner/ Reseller/ DistributorAffiliate shopping program allowing supporters to earn donations to MSU when making purchases. Earns donations at no added cost to shoppers.
• Kourage HealthminorStrategic or Co-development PartnerPartner in presenting webinars on managing expectations with movement and exercise for myositis patients, working with MSU to provide expert-led educational content.
• Cure JM FoundationminorStrategic or Co-development PartnerRelated nonprofit organization dedicated to finding a cure for Juvenile Dermatomyositis and Juvenile Polymyositis. Referenced on MSU's juvenile myositis page for additional resources.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• The Myositis Association: The Myositis Association is a long-established patient advocacy nonprofit serving the same myositis patient population with support, education, advocacy, and research funding — directly competing with MSU for members, donors, and pharma sponsorships.
• Cure JM Foundation: Cure JM is dedicated to juvenile myositis (JM) and is referenced on MSU's own website as a partner/resource for juvenile patients. They directly compete for juvenile myositis family engagement, donations, and pediatric myositis research funding.
• Dermatomyositis.com: Listed as a partner organization of MSU on its website, Dermatomyositis.com serves the same dermatomyositis patient sub-segment with overlapping educational content and community resources.

Broad incumbents

• Arthritis Foundation: A large established nonprofit supporting all forms of arthritis including polymyositis and dermatomyositis. It competes for general donations, walkathon participation, and pharma sponsorships across autoimmune conditions that include MSU's patient population.
• National Organization for Rare Disorders (NORD): NORD is the umbrella organization of which MSU is a Platinum Member. It offers overlapping patient support, advocacy, and research programs across 7,000+ rare diseases including myositis, competing at the policy and grantmaking level.
• Global Genes: Global Genes is a rare disease advocacy alliance of which MSU is a founding member. It provides overlapping educational resources, advocacy training, and rare disease community programming that competes for the same audience attention and corporate sponsorships.
• Muscular Dystrophy Association (MDA): MDA is a large muscle disease nonprofit that historically included inclusion body myositis and other myopathies within its research portfolio, competing for muscle-disease philanthropy, walkathon participants, and pharma research funding.

Emerging players

• Lupus Foundation of America: The Lupus Foundation serves patients with a related autoimmune condition that overlaps with myositis (lupus-myositis overlap). It competes for autoimmune patient community attention, walkathon fundraising, and overlapping pharma sponsors (e.g., immunology-focused companies).

Others

• Inspire (Inspire.com): Inspire is the platform provider that hosts MSU's Myositis Support Community. It is an enabling ecosystem partner rather than a competitor, providing the underlying patient community infrastructure MSU depends on for online peer support.
• Antidote Technologies: Antidote is the clinical trial matching platform that powers MSU's clinical trial finder. It is a technology/infrastructure partner in the drug-development pipeline, not a competing organization.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/myositissupport
• YouTubeyoutube.com/+understandingmyositisorganization
• Facebookfacebook.com/understandingmyositis
• LinkedInlinkedin.com/company/myositissupport
• Instagraminstagram.com/myositis
• Pinterestpinterest.com/myositis

Compliance7 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Myositis Support and Understanding Association