Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)

What Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) does

Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) is a US nonprofit patient advocacy organization founded in 1981 and headquartered in Lansdale, Pennsylvania, serving individuals and families affected by ichthyosis and related epidermal differentiation disorders (EDD). The organization is the leading global advocacy group for this rare disease community, with 45 years of accumulated programming, the world's largest ichthyosis directory covering 30+ types, and an Ichthyosis Registry with 1,600+ participants. It delivers an integrated suite of services including peer support navigation, a global Physician Finder database, financial aid programs, life-stage educational resources, mental health content, and an annual National Conference, supported by a Medical & Scientific Advisory Board drawn from elite institutions such as Northwestern, Yale, and Stanford.

FIRST is funded exclusively through donations and contributions, including one-time gifts, employer matching programs, donor-advised funds, stock and IRA donations, grassroots community fundraisers, and corporate academic partnerships with organizations such as Beiersdorf, BioCryst Pharmaceuticals, and Azitra. The organization has distributed $2.2M in cumulative research grant funding to academic investigators and maintains NORD membership as part of the broader US rare disease advocacy infrastructure. Revenue is not publicly disclosed; operations are supported by a 13-person staff. There are no commercial products, no pricing model, and no technology platform beyond the public website, DonorPerfect payment processing, and Zoom-based virtual events. The organization's core assets are its community network, content library, advisory talent, and the rare disease patient registry, which together serve as the principal recruitment channel for pharmaceutical and academic research collaborations.

Name

Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)

Legal name

Foundation for Ichthyosis & Related Skin Types, Inc.

Website

https://firstskinfoundation.org

Company type

Private

Founded year

1981

Operating status

Operating

Headcount range

11–50 employees

Short description

Foundation for Ichthyosis & Related Skin Types (FIRST) is a US nonprofit founded in 1981 that serves individuals and families affected by ichthyosis and related rare skin disorders through education, peer support, research funding, a patient registry, and financial aid programs.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient support services
• Skin disorder education
• Medical research grants
• Community health resources

Headquarters

HQ city

Lansdale

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, Others

Revenue model

1. Donations and Contributions: FIRST relies primarily on donations from individuals, families, and supporters. The organization offers multiple giving options including one-time donations, matching gifts (through employer programs), DAF (Donor-Advised Fund) donations, stock portfolio donations, and IRA donations. The organization highlights specific impact examples: $25 provides a New Family welcome kit, $100 funds one week of cream, and $500 sponsors a scholarship for the National Conference.
2. Grassroots Fundraising: Community members organize and host fundraising events to support FIRST's mission. Examples include the Annual Cornhole Tournament hosted by the Schlitt and Goff families, and Bailey's Broadway Birthday Bash grassroots events.

Go-to-market motion2 records

Distribution channels5 records

Marketing channels7 records

Core offering

Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) is a 501(c)(3) nonprofit patient-advocacy organization that supports individuals and families affected by ichthyosis and related skin types. It delivers free programs including peer support navigation, physician referrals, an annual national conference, a patient registry, research grants, financial aid, and educational newsletters.

Product overview

FIRST is a nonprofit patient advocacy organization offering a suite of support services, information resources, and research programs for individuals and families affected by ichthyosis and related skin types (epidermal differentiation disorders/EDD). The organization provides a coordinated ecosystem of services including a Peer Support Navigator Program connecting patients with trained mentors, a Physician Finder database of specialists, an annual National Conference, an Ichthyosis Registry for research participation (1,600+ participants), and a Research Grant Program ($2.2M funded). Additional offerings include financial aid programs, the quarterly Ichthyosis Focus newsletter, downloadable educational guides, clinical trial listings, and comprehensive life-stage resources covering newborns through adults. The organization also maintains the largest directory of ichthyosis types (30+) with genetic classifications.

Differentiator

Problem solved

Functional benefit

Products and services

• Peer Support Navigator Program A peer-mentorship service connecting individuals and families affected by ichthyosis with trained navigators who provide lived-experience support and resource guidance.
• Physician Finder A referral service that helps patients locate dermatologists and specialists experienced in diagnosing and treating ichthyosis and related skin types.
• National Conference An annual in-person and virtual gathering bringing together ichthyosis patients, families, clinicians, and researchers for education, networking, and community building.
• Ichthyosis Patient Registry A patient registry collecting clinical and demographic information from 1,600+ participants with ichthyosis and related skin types to support rare-disease research.
• Research Grants Grant funding awarded to scientific and clinical researchers investigating ichthyosis, with $2.2 million in research funding directed historically.
• Financial Aid Program A financial-assistance program that provides support to ichthyosis patients and families to help offset costs associated with managing the condition.
• Educational Newsletters Periodic newsletters delivering disease-specific educational content, research updates, and community news to members of the ichthyosis community.

Quantifiable outcome

• $2.2M in research funding distributed to advance ichthyosis care
• +3 more outcomes

Named customers5 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

Partnerships

Seven partnerships are on record, tiered core and major.

• Yale School of MedicinecoreStrategic or Co-development PartnerAcademic partner collaborating on research initiatives. Yale University School of Medicine personnel serve on FIRST's Medical & Scientific Advisory Board (Dr. Christopher Bunick, MD, PhD). The Yale School of Medicine is a premier research institution advancing ichthyosis research.
• Northwestern UniversitycoreStrategic or Co-development PartnerAcademic partner where Dr. Amy Paller, MD serves as Chair of FIRST's Medical & Scientific Advisory Board. Northwestern is a key research institution for ichthyosis studies, hosting preddoctoral fellows working on ichthyosis research in collaboration with FIRST.
• BeiersdorfmajorStrategic or Co-development PartnerCorporate partner contributing to FIRST's academic and corporate partnership program. Beiersdorf is a global skin care company known for brands including Nivea and Eucerin.
• BioCryst PharmaceuticalsmajorStrategic or Co-development PartnerCorporate partner in FIRST's academic and corporate partnership program. BioCryst Pharmaceuticals focuses on developing treatments for rare diseases, which aligns with ichthyosis research and treatment development.
• AzitramajorStrategic or Co-development PartnerCorporate partner in FIRST's academic and corporate partnership program. Azitra is a biotechnology company focused on skin health and microbiome research relevant to ichthyosis.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerFIRST is a member of NORD, the leading independent organization representing the 25-30 million Americans affected by rare diseases. This membership provides access to resources, advocacy support, and collaboration with the broader rare disease community.
• Academic Investigators and Pharmaceutical CompaniescoreStrategic or Co-development PartnerFIRST partners with academic investigators and pharmaceutical companies to facilitate patient recruitment for clinical trials, behavioral studies, and member surveys. Contact: Christine Wassel at [email protected] for research partnership inquiries.

Scale indicators6 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• American Academy of Dermatology: Largest professional dermatology association in the U.S., serving physicians with education, advocacy, and member services. Comparable as a dermatology-focused organization with overlapping physician network and research orientation to FIRST's Medical & Scientific Advisory Board.
• National Organization for Rare Disorders (NORD): Umbrella organization representing the 25-30 million Americans affected by rare diseases. FIRST is a NORD member; comparable as a broader-scale rare-disease advocacy and grantmaking organization with policy, research, and member-services programs.
• Society for Pediatric Dermatology: Professional society for pediatric dermatologists, with overlapping membership to FIRST's physician finder database. Comparable as a dermatology-specialty organization connecting expert clinicians and advancing research on rare skin conditions.

Direct peers

• National Psoriasis Foundation: Patient advocacy organization for individuals with psoriasis and psoriatic arthritis. Comparable to FIRST in mission, service structure (research funding, patient support, advocacy, physician directory), and skin-disease nonprofit model.
• PXE International: Patient advocacy and research organization for Pseudoxanthoma Elasticum (PXE), a rare genetic disorder. Directly comparable to FIRST as a small rare-disease foundation combining patient support, registry-based research, and grantmaking functions.
• Foundation for Sarcoidosis Research: Patient advocacy organization focused on sarcoidosis, a rare inflammatory disease. Comparable to FIRST in model — research grantmaking, patient education, physician finder, advocacy, and small-team nonprofit operations.
• DEBRA International: Umbrella organization for national groups supporting patients with Epidermolysis Bullosa (EB), a rare genetic skin disorder. Closely comparable to FIRST as a rare skin disease patient advocacy and research funding organization with global reach and member-driven model.
• National Eczema Association: Patient advocacy organization serving individuals affected by eczema/atopic dermatitis. Directly comparable to FIRST as a skin-condition patient advocacy nonprofit providing support, education, research funding, and physician finder resources for a chronic skin disease population.
• Cutaneous Lymphoma Foundation: Patient advocacy nonprofit for individuals with cutaneous lymphoma (a rare skin condition). Comparable to FIRST as a small rare skin disease patient advocacy organization providing support, education, physician finder, and research programs.
• Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA of America): U.S. affiliate of DEBRA International supporting EB patients and families. Comparable to FIRST as a U.S.-based rare skin disease patient advocacy nonprofit providing direct support, research funding, and community programs.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/user/firstskinfoundation
• Facebookfacebook.com/foundationforichthyosis
• LinkedInlinkedin.com/company/foundation-for-ichthyosis-and-related-skin-types-inc-first
• Instagraminstagram.com/foundationforichthyosis

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST)