The Myositis Association

What The Myositis Association does

The Myositis Association (TMA) is a 501(c)(3) nonprofit patient advocacy organization founded in 1993 and headquartered in Columbia, Maryland, serving individuals affected by myositis — a group of rare autoimmune diseases (including dermatomyositis, polymyositis, inclusion body myositis, immune-mediated necrotizing myopathy, juvenile myositis, and antisynthetase syndrome) that collectively affect an estimated 75,000 people in the United States. TMA operates as a free-membership patient services organization with more than 10,000 members worldwide, delivering education, peer support, research funding, and advocacy through a multi-channel platform.

Core offerings include the annual MyoCon global patient conference (held annually since 1995), 35+ expert-led educational webinars per year, a quarterly Outlook magazine and podcast library, 40+ regional and virtual support groups, 9+ identity-based affinity groups (LGBTQIA+, women of color, men of color, military veterans, care partners), specialist directories (find-a-doctor, find-a-physical-therapist), clinical trial listings, and peer support. The research function is anchored by a grants program begun in 2002 that has disbursed nearly $8 million to myositis investigators, complemented by the dedicated Cure IBM Research Fund and the Meredith C. Thomas Memorial Research Fellowship. Underlying technology is conventional nonprofit stack: Donorbox for donations, Zoom for virtual programming, YouTube for content distribution, and Google/iCalendar for event scheduling — there is no proprietary AI/ML or software product.

The business model is a diversified nonprofit revenue mix comprising individual donations, corporate grants and sponsorships from a 15-member Corporate Advisory Council of pharma and biotech partners (Pfizer, Novartis, BMS, AstraZeneca, Amgen, Argenx, Cabaletta Bio, Cartesian Therapeutics, Nkarta, Mallinckrodt, Boehringer Ingelheim, Octapharma, ANI Pharmaceuticals, Abcuro, Priovant Therapeutics), planned giving and bequests via the Legacy Society, and episodic federal grants (including a $1M Department of Defense award in 2011). Stated annual budget is approximately $1M; headcount is 1-10 staff augmented by consultants, with Executive Director Paula Eichenbrenner leading a governance structure including a 23-member Medical Advisory Board drawn from leading institutions (Johns Hopkins, Mayo Clinic, NIH, Stanford, University of Pennsylvania).

Name

The Myositis Association

Legal name

The Myositis Association

Website

https://myositis.org

Company type

Private

Founded year

1993

Operating status

Operating

Headcount range

1–10 employees

Short description

The Myositis Association is a 501(c)(3) nonprofit patient advocacy organization serving 10,000+ myositis patients, care partners, and providers globally through education, peer support, research grants ($8M funded since 2002), and the annual MyoCon conference, headquartered in Columbia, MD.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Other Social Advocacy Organizations (813319), Social Advocacy Organizations (81331), Other Individual and Family Services (624190)

SIC

Services-Membership Organizations (8600), Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Care Management & Population Health Program Administration (HLAEALAG)

Keywords

• Patient advocacy organization
• Rare disease support
• Medical research grants
• Patient education resources
• Chronic disease community

Headquarters

HQ city

Columbia

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: Tax-deductible donations from individuals supporting the myositis community. Donations fund research, patient education, support groups, conferences, and general operations.
2. Corporate Grants and Sponsorships: Educational and research grants from corporations including pharmaceutical companies. Corporate partners provide financial support in exchange for visibility and engagement opportunities.
3. Planned Giving and Legacy Gifts: Bequests through wills/trusts, retirement plan beneficiary designations, life insurance gifts, charitable gift annuities, charitable remainder trusts. Legacy Society recognizes donors who have included TMA in their estate plans.
4. Federal Grants: Government funding including Department of Defense research grants ($1 million in 2011) and NIH appropriations for myositis research and patient registry development.
5. Event Sponsorships: Corporate sponsorship of annual MyoCon conference, webinars, and affinity group programming through the Corporate Advisory Council.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels11 records

Core offering

The Myositis Association (TMA) is a 501(c)(3) nonprofit patient advocacy organization that delivers free education, peer support, advocacy, and research funding for individuals affected by myositis, a group of rare autoimmune inflammatory muscle diseases. It operates a global patient engagement platform combining an annual international conference (MyoCon), expert-led webinars, support groups, affinity communities, publications, and a research grants program that has funded nearly $8 million in myositis research since 2002. Membership and programs are provided at no cost to patients, care partners, and medical professionals worldwide.

Product overview

The Myositis Association (TMA) is a nonprofit patient organization providing education, research funding, and support services for people affected by myositis (a group of rare autoimmune diseases causing muscle inflammation and weakness). TMA operates as a unified patient engagement platform combining multiple service lines: annual conferences (MyoCon), educational webinars and podcasts (Ask the Expert Series, Research Insights, Empowerment Clinics), a digital resource library with publications and research, support groups (regional, virtual worldwide, and affinity groups), peer support programs, and a research grants program that has funded nearly $8 million in myositis research since 2002. The organization also conducts advocacy programs, publishes the quarterly Outlook magazine, and coordinates awareness events including Myositis Awareness Month (May) and World Myositis Day (September 21).

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• Over 10,000 members served annually with educational resources and support
• +4 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration8 records

Partnerships

21 partnerships are on record, tiered flagship and core.

• National Institutes of Health (NIH)flagshipStrategic or Co-development Partner · 31 March 2026TMA was selected as one of 15 winners in the NIH NOURISH Autoimmunity Challenge for its dietary intervention study proposal comparing Mediterranean diet and Autoimmune Protocol for dermatomyositis treatment.
• Myositis International Health and Research Collaborative Alliance (MIHRA)coreStrategic or Co-development Partner · 1 January 2025TMA co-hosted the first We Care for Rare Summit: Celebrating Myositis Science and Rare Patient Stories in partnership with MIHRA and Nori's Fight. Global collaborative of myositis-focused patient advocacy organizations promoting international partnership.
• Nori's FightcoreStrategic or Co-development Partner · 1 January 2025TMA partnered with Nori's Fight and MIHRA to host the We Care for Rare Summit celebrating myositis science and patient stories.
• Myositis Support and UnderstandingcoreStrategic or Co-development Partner · 1 January 2024TMA partnered with MSU to host an Externally Led Patient Focused Drug Development meeting with the FDA to bring awareness to dermatomyositis patient needs.
• Food and Drug Administration (FDA)coreStrategic or Co-development Partner · 1 January 2024TMA partnered with Myositis Support and Understanding to host an Externally Led Patient Focused Drug Development meeting with the FDA to inform regulatory processes for dermatomyositis treatments.
• Global Conference on Myositis (GCOM)coreStrategic or Co-development Partner · 1 January 2024TMA participated in GCOM 2024 in Pittsburgh, PA. TMA led a coalition of 12 international patient advocacy organizations to bring patient voices into scientific presentations.
• AbcurocoreGTM or Marketing PartnerCorporate Advisory Council member providing financial support for TMA programs and education. Abcuro is a biotech company developing treatments for autoimmune diseases including myositis. Receives website logo placement, conference access, and stakeholder communication opportunities.
• AMGENcoreGTM or Marketing PartnerCorporate Advisory Council member supporting TMA's patient education and research programs. Pharmaceutical company focused on biologics and innovative medicines.
• ANI Pharmaceuticals, Inc.coreGTM or Marketing PartnerCorporate Advisory Council member providing research and educational support. Specialty pharmaceutical company.
• ArgenxcoreGTM or Marketing PartnerCorporate Advisory Council member. Sponsor of Myositis Awareness Month 2026. Immunology-focused biotech company.
• AstraZenecacoreGTM or Marketing PartnerCorporate Advisory Council member supporting TMA's mission. Global pharmaceutical company focused on biopharmaceuticals.
• Boehringer Ingelheim International GmbHcoreGTM or Marketing PartnerCorporate Advisory Council member. Global pharmaceutical company providing financial and educational support.
• Bristol Myers SquibbcoreGTM or Marketing PartnerCorporate Advisory Council member. Global biopharmaceutical company supporting TMA's patient programs.
• Cabaletta BiocoreGTM or Marketing PartnerCorporate Advisory Council member. Biotechnology company developing targeted cell therapies for autoimmune diseases.
• Cartesian Therapeutics, Inc.coreGTM or Marketing PartnerCorporate Advisory Council member. Biotechnology company focused on RNA cell therapy.
• Mallinckrodt PharmaceuticalscoreGTM or Marketing PartnerCorporate Advisory Council member. Specialty pharmaceutical company supporting TMA programs.
• NkartacoreGTM or Marketing PartnerCorporate Advisory Council member. Biopharmaceutical company developing natural killer cell therapies for cancer and autoimmune diseases.
• NovartiscoreGTM or Marketing PartnerCorporate Advisory Council member. Global pharmaceutical company providing educational and research support.
• OctapharmacoreGTM or Marketing PartnerCorporate Advisory Council member. Specialty pharmaceutical company. Facilitated first FDA-approved treatment for dermatomyositis (Octagam 10%).
• PfizercoreGTM or Marketing PartnerCorporate Advisory Council member. Global pharmaceutical company supporting TMA's mission and patient education.
• Priovant TherapeuticscoreGTM or Marketing PartnerCorporate Advisory Council member. Sponsor of Myositis Awareness Month 2026. Biopharmaceutical company developing treatments for autoimmune diseases.

Scale indicators8 records

Recent moves10 records

Expansion highlights6 records

Broad incumbents

• Muscular Dystrophy Association: MDA is a much larger established patient advocacy organization focused on neuromuscular diseases, including some adjacent muscle-wasting conditions. It competes with TMA for muscle-disease research dollars, pharmaceutical sponsorships, and broader patient/donor mindshare.
• National Organization for Rare Disorders: NORD is the umbrella advocacy organization for rare diseases in the U.S. TMA is a NORD Platinum Member, but NORD also competes for philanthropic dollars and serves as an alternative destination for myositis patients seeking resources.
• Arthritis Foundation: Arthritis Foundation is a large established advocacy organization for arthritis and related autoimmune musculoskeletal conditions including myositis subtypes treated by rheumatologists. It competes for corporate sponsorships, fundraising walks/events, and overlapping patient populations.
• American Autoimmune Related Diseases Association: AARDA is the umbrella advocacy organization for autoimmune diseases. Myositis is an autoimmune condition and AARDA competes with TMA for autoimmune-focused corporate sponsorships and donor support while serving overlapping patient populations.
• Lupus Foundation of America: Lupus Foundation of America is an established patient advocacy nonprofit for lupus, a related autoimmune disease sharing therapeutic pathways (e.g., immunosuppressants) with myositis. Comparable in mission, organizational structure, and donor base.

Others

• Global Genes: Global Genes is a rare disease advocacy alliance that recognizes rare disease champions (TMA's IMACS nomination received a Global Genes Rare Champion of Hope Award in 2019). It is not a direct competitor but operates as an enabling ecosystem partner and alternative umbrella voice for rare disease communities.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a rare disease policy and advocacy organization that, like NORD, competes for advocacy-focused philanthropic dollars and policy attention. TMA's federal advocacy work overlaps with EveryLife's broader legislative agenda.

Regional players

• Myositis International Health and Research Collaborative Alliance (MIHRA): MIHRA is a global collaborative of myositis-focused patient advocacy organizations. TMA co-hosted the 2025 We Care for Rare Summit with MIHRA and Nori's Fight. MIHRA represents a federated peer network rather than a direct U.S. donor competitor.

Direct peers

• Cure JM Foundation: Cure JM is a direct peer focused on juvenile myositis, serving an overlapping patient population with TMA's JM segment. Both fund research, host family conferences, and compete for corporate and family foundation support in juvenile myositis.
• Myositis Support and Understanding: Myositis Support and Understanding is a direct peer serving the same myositis patient community with support groups, education, and advocacy. TMA and MSU have collaborated on the 2024 FDA EL-PFDD meeting on dermatomyositis, and both compete for the same patient and donor base.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/themyositisassc
• YouTubeyoutube.com/channel/UCef36fRGT90-DDT7KuPtnwA
• Facebookfacebook.com/Myositis
• LinkedInlinkedin.com/company/the-myositis-association
• Instagraminstagram.com/themyositisassociation
• Pinterestpinterest.com/themyositisasso/_saved

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about The Myositis Association