Scleroderma Foundation

What Scleroderma Foundation does

The National Scleroderma Foundation is a 501(c)(3) nonprofit headquartered in Danvers, Massachusetts, founded in 1998 to serve the more than 300,000 Americans living with scleroderma. Its functional mission spans three pillars: funding peer-reviewed research into disease mechanisms and treatments, providing education and resources to patients and caregivers, and sustaining a national peer-support network. The Foundation co-funds research with partners including the National Institutes of Health and the Scleroderma Research Foundation, and maintains a recurring corporate-philanthropy relationship with scleroderma-relevant pharmaceutical manufacturers.

The Foundation's core programmatic products consist of a chapter network (12+ regional chapters), a peer-support infrastructure (155+ support groups), and a recurring fundraising-and-awareness event portfolio (35+ annual "Stepping Out to Cure Scleroderma" walks). Educational and convening products include the annual National Patient Conference (2026 edition planned for Baltimore), the newly launched inaugural Patient Advocacy Summit (April 2026), and a pediatric-focused children's book (May 2026). Recent organizational development includes the appointment of a dedicated Vice President of Philanthropy and the absorption of executive talent into industry — exemplified by former CEO Mary Wheatley's move to argenx as a global specialty medical lead — signaling the Foundation's role as a credible pipeline for scleroderma-focused industry partnerships.

The business model is donor-supported rather than commercial: revenue is generated through individual donations, membership dues, corporate sponsorships from pharmaceutical companies (argenx, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, AbbVie, Merck), peer-to-peer fundraising from walks, and planned giving programs. There is no fee-for-service or product revenue; accordingly, growth is measured by program reach, donor base, and research-funding deployment rather than top-line revenue. Financial statements are not publicly disclosed in the available data.

Name

Scleroderma Foundation

Legal name

National Scleroderma Foundation

Website

https://scleroderma.org

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

11–50 employees

Short description

The National Scleroderma Foundation is a 501(c)(3) nonprofit that funds scleroderma research, provides patient education, and operates a national peer-support network serving 300,000+ Americans living with the disease.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy and Disease Support Services

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Individual and Family Services (6241), Grantmaking and Giving Services (8132)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Rare Disease & Special Needs Support Organizations (BPAGACAM), Health & Medical Research Grantmaking Foundations (BPAGAKAL), Public Health Financing, Budgeting & Grants Management (HLAJAMAC)

Keywords

• Patient advocacy services
• Rare disease support
• Autoimmune disease education
• Medical research funding
• Community support programs

Headquarters

HQ city

Danvers

HQ country

United States

HQ region

North America

Offices2 records

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 Contributions: Individual donations from the public, including one-time and recurring gifts, matching gifts programs, and tribute donations.
2. Membership Program: Annual membership with benefits including the Scleroderma Voice quarterly magazine and access to member resources.
3. Event Fundraising: Stepping Out to Cure Scleroderma signature walk events and fundraising campaigns at chapter and national levels.
4. Corporate Sponsorships: Pharmaceutical company sponsors for conferences, walks, and programs including Champion, Partner, Collaborator, and Supporter tiers.
5. Planned Giving: Legacy giving through the Scleroderma Hope Society, including bequests, charitable trusts, and estate planning.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels12 records

Core offering

The National Scleroderma Foundation is a nonprofit patient advocacy organization that provides free education, peer support, and community programs to people with scleroderma, their caregivers, and families. It funds peer-reviewed scientific research through its Scleroderma Research Grant Program, designates Scleroderma Research & Treatment Centers via its Medical & Scientific Advisory Board, and convenes the patient community through an annual National Scleroderma Conference, regional chapters, and 155+ support groups. Services are offered at no cost to patients and are sustained by individual donations, corporate pharmaceutical sponsorships, event fundraising, memberships, and planned giving.

Product overview

The National Scleroderma Foundation operates as a non-profit organization providing a portfolio of patient support services, educational resources, and community programs rather than a unified software product. The core offerings include the Scleroderma Information Packet (SIP), Virtual University educational platform, and quarterly Scleroderma Voice Magazine. Major event programs include the annual National Scleroderma Conference (July 2026 in Baltimore), the Kids Get Scleroderma, Too! Conference, and the Stepping Out to Cure Scleroderma walk program with 35+ annual walks. Support services include the HOPE Line (800-722-4673), Peer Mentor Program, and 155+ support groups. Resource offerings include Fact Sheets on clinical topics, the Find a Treatment Center directory, Find a Clinical Trial search tool, and pediatric-specific resources covering localized and systemic sclerosis in children. The Foundation also funds peer-reviewed research through its Scleroderma Research Grant Program.

Differentiator

Problem solved

Functional benefit

Products and services

• HOPE Line Free telephone support service (800-722-4673) available 8:30am-5pm ET that provides information, emotional support, and resource navigation to people living with scleroderma, caregivers, families, and the public. Voicemail is available after hours with response within 2 business days.
• Scleroderma Support Groups
• Peer Mentor Program
• National Scleroderma Conference Annual in-person educational conference providing access to scleroderma experts, research updates, and community connection. The 2026 conference takes place July 17-19 in Baltimore.
• Kids Get Scleroderma, Too! Conference
• Virtual University
• Fact Sheets
• Scleroderma Information Packet (SIP)
• Scleroderma Research Grant Program
• Find a Treatment Center
• Find a Clinical Trial
• Scleroderma Voice Magazine
• Pediatric Scleroderma Resources
• Stepping Out to Cure Scleroderma

Quantifiable outcome

• More than 300,000 Americans living with scleroderma served through education, support, and advocacy programs
• +1 more outcomes

Segments4 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered champion, partner, collaborator and supporter.

• Mediar TherapeuticschampionGTM or Marketing PartnerChampion-level national sponsor of the Stepping Out to Cure Scleroderma walk program, supporting awareness and fundraising events across the country.
• Adicet BiopartnerGTM or Marketing PartnerPartner-level national sponsor supporting Stepping Out to Cure Scleroderma walks and foundation programs.
• argenxpartnerGTM or Marketing PartnerPartner-level national sponsor supporting walks and the National Scleroderma Conference as both Partner and Collaborator.
• AstraZenecapartnerGTM or Marketing PartnerPartner-level national sponsor supporting Stepping Out to Cure Scleroderma walks and National Scleroderma Conference.
• Boehringer IngelheimpartnerGTM or Marketing PartnerPartner-level national sponsor supporting walks and National Scleroderma Conference.
• Bristol Myers SquibbpartnerGTM or Marketing PartnerPartner-level national sponsor supporting walks and National Scleroderma Conference.
• Rejuvenation HealthpartnerGTM or Marketing PartnerPartner-level national sponsor supporting Stepping Out to Cure Scleroderma walks.
• NkartacollaboratorGTM or Marketing PartnerCollaborator-level sponsor for the 2026 National Scleroderma Conference.
• MerckcollaboratorGTM or Marketing PartnerCollaborator-level sponsor for the 2026 National Scleroderma Conference.
• AbbViesupporterGTM or Marketing PartnerSupporter-level sponsor for the 2026 National Scleroderma Conference.

Scale indicators4 records

Recent moves5 records

Expansion highlights5 records

Emerging players

• National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy and research nonprofit; an indirect competitor/aggregator that siphons donor and policy attention across rare conditions and could increasingly position itself between patients and condition-specific charities.
• Autoimmune Registry: Emerging data/registry organization focused on aggregating autoimmune disease patient data including scleroderma; could compete with the Foundation's research-funding and clinical-trial-matching functions as real-world evidence becomes a more valuable asset.

Broad incumbents

• American Autoimmune Related Diseases Association (AARDA): Cross-disease autoimmune advocacy organization that competes for advocacy mindshare, rare-disease policy wins and federal funding that could otherwise flow to disease-specific charities like the Scleroderma Foundation.
• Arthritis Foundation: Larger, broader-incumbent autoimmune nonprofit that raises funds and runs programs across many rheumatic conditions; competes with the Scleroderma Foundation for pharma sponsorships and overlapping patient households while not specializing in scleroderma.

Direct peers

• Lupus Foundation of America: National US nonprofit focused on a related autoimmune disease (lupus) with a near-identical operating model: patient education, support groups, national conferences, peer-reviewed research grants, and pharma/biotech sponsorship. Directly comparable in mission shape, fundraising mechanics and patient advocacy footprint.
• Pulmonary Hypertension Association: Disease-specific national health nonprofit for another rare condition, operating support groups, regional chapters, research funding, advocacy and a national conference — a strong structural analog for how a small HQ can run a national footprint around a low-prevalence disease.
• Myasthenia Gravis Foundation of America: US national nonprofit dedicated solely to myasthenia gravis with peer-reviewed research grants, patient education, support networks and pharma partnerships — similar rare-disease autoimmune orientation and revenue mix.
• Sjogren's Foundation: National US nonprofit for Sjögren's disease, an autoimmune condition frequently comorbid with scleroderma; similar research grant, education and patient support model with overlapping specialist audiences and corporate sponsor pool.

Regional players

• Scleroderma Society of Canada: Canadian national nonprofit serving scleroderma patients with a similar support group, research and education model — a regional peer that prevents the Scleroderma Foundation from claiming fully comprehensive North American coverage.

Others

• Inspire: Online patient community platform used by the Foundation's discussion board; a technology ecosystem participant/enabler that the Foundation depends on for digital peer support rather than a direct competitor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCIHi1E5RDegr0WRVISgo9Fw
• Facebookfacebook.com/SclerodermaUS
• LinkedInlinkedin.com/company/scleroderma-foundation
• Instagraminstagram.com/sclerodermaus
• Xx.com/scleroderma

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Scleroderma Foundation