Fat Disorders Research Society, Inc.

What Fat Disorders Research Society, Inc. does

Fat Disorders Research Society, Inc. (FDRS), operating under the renamed brand Fat Disorders Resource Society, is a US 501(c)(3) nonprofit founded in 2009 by Sue Grimshaw, Susan Smith, and Carole Reed. It is the founding patient-advocacy organization for adipose tissue disorders, with primary clinical focus on lipedema, Dercum's disease, and Madelung's disease. FDRS is governed by an all-volunteer board and runs without paid staff, functioning primarily as an education, advocacy, and community-convener rather than a clinical-care provider.

The organization's core "products" are educational rather than commercial: a Squarespace-hosted content library, a YouTube channel, patient information cards, financial hardship scholarships, and a national conference that has convened patients, physicians/therapists, and researchers since 2009 (drawing 400+ attendees in 2023). The published "Standard of Care for Lipedema in the United States" is its most consequential content asset, positioning the society as a clinical-content authority in a category that lacks widely adopted US treatment guidelines. The operating stack is intentionally low-cost: Squarespace, YouTube, Email, Facebook, PayPal, Whova (event app), Eventbrite (ticketing), and iGive (cause-marketing fundraising).

FDRS's business model is donation-and-event funded. Revenue sources include individual donations, conference registration fees, and tiered sponsorship packages ranging from $500 to $15,000, supplemented by iGive cause-marketing affiliate revenue. The organization carries Candid Bronze Level Participant status and is publicly working toward Silver in 2026, indicating a focus on transparency and operating-maturity upgrades that could unlock larger institutional grants. The most recent operational signals — a 2025 rebrand from "Research" to "Resource," an interim leadership transition to Briana Garrott, and a deliberate move of the next conference to Spring 2027 — together suggest an organization in mid-pivot, broadening mission scope while recalibrating cadence under volunteer-only capacity constraints.

Name

Fat Disorders Research Society, Inc.

Legal name

The Fat Disorders Research Society

Website

https://fatdisorders.org

Company type

Private

Founded year

2009

Operating status

Operating

Headcount range

1–10 employees

Short description

Fat Disorders Resource Society (FDRS) is a US 501(c)(3) nonprofit, founded in 2009, providing education, advocacy, and community resources on adipose tissue disorders including lipedema, Dercum's disease, and Madelung's disease. It serves patients, physicians, researchers, and therapists via digital content, patient information cards, and a national conference.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Education

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133)

SIC

Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

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

Keywords

• Adipose tissue disorders
• Lipedema education
• Patient advocacy services
• Rare disease support
• Medical conference services

Headquarters

HQ city

Humble

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: FDRS operates as a US registered 501(c)(3) not-for-profit organization (EIN 26-4545388) that relies entirely on donations and volunteers. Donations cover costs of printing and shipping educational materials, conference attendance scholarships, and organizational operations.
2. Conference Sponsorships: FDRS generates revenue through conference sponsorship packages at various tiers (Opening Reception Sponsor $15,000, Lunch Sponsor $7,500, Saturday Night Dinner Sponsor $10,000, Breakfast Sponsor $5,000, Silver Sponsorship, Bronze Sponsorship $2,500, Supporter $1,500, Wi-Fi $1,000, Mobile App Sponsorship $3,500, Attendee Bag Insert $500, Additional Booth Representatives $215-$360.50).
3. Educational Materials: FDRS provides informational cards for lipedema and Dercum's disease. Donations are requested to cover printing and shipping costs for physical cards.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

Fat Disorders Research Society, Inc. is a 501(c)(3) nonprofit organization that delivers education, advocacy, research support, and community resources focused on adipose tissue disorders including lipedema, Dercum's disease, and Madelung's disease. Its core deliverables are an educational website, free YouTube videos, downloadable patient information cards, an annual national conference, treatment guides, and peer support group referrals. The organization operates as a virtual group of unpaid volunteers and is funded primarily through donations and conference sponsorships.

Product overview

Fat Disorders Resource Society (FDRS) operates as an educational platform offering a unified suite of resources for people affected by adipose tissue disorders. The core offering is the FDRS website platform, which provides comprehensive educational content about lipedema, Dercum's disease, and Madelung's disease. This platform is supported by physical and digital educational resources including Lipedema Cards and Dercum's Disease Cards for sharing with healthcare providers. The organization hosts an annual FDRS conference that serves as a central educational event, complemented by free YouTube video resources. FDRS also offers conference sponsorship packages and financial hardship scholarships to increase accessibility. The portfolio connects patients, physicians, researchers, and therapists through education, advocacy, and community support.

Differentiator

Problem solved

Functional benefit

Products and services

• Lipedema Cards Physical informational cards containing key clinical information about lipedema, intended to be given to physicians to support faster diagnosis and treatment. Available as a free downloadable PDF; physical copies are mailed to patients or directly to physician offices, with donations requested to cover printing and shipping costs. Targeted at patients with lipedema and the healthcare providers who treat them.
• Dercum's Disease Cards Physical informational cards containing key clinical information about Dercum's disease, intended to be shared with healthcare providers to aid diagnosis and treatment. Available as a free downloadable PDF; physical copies are mailed to patients or physician offices, with donations requested to cover printing and shipping. Targeted at patients with Dercum's disease and the physicians treating them.
• FDRS Annual Conference Annual national conference bringing together patients, physicians, researchers, and therapists for sessions on diagnosis, treatment, and research of lipedema, Dercum's disease, and Madelung's disease. Includes breakout sessions, research presentations, networking opportunities, and exhibitor booths. CME credits are available at conferences. Registration fees apply, with financial hardship scholarships available based on federal poverty level guidelines. The 2023 conference in Atlanta drew over 400 virtual and onsite attendees.
• Conference Sponsorship Packages Tiered sponsorship packages for the FDRS annual conference, including Opening Reception Sponsor ($15,000), Saturday Night Dinner Sponsor ($10,000), Lunch Sponsor ($7,500), Breakfast Sponsor ($5,000), Mobile App Sponsorship ($3,500), Silver Sponsorship, Bronze Sponsorship ($2,500), Supporter ($1,500), Wi-Fi Sponsorship ($1,000), Attendee Bag Insert ($500), and Additional Booth Representatives ($215-$360.50). Targeted at medical device, pharmaceutical, and treatment provider companies seeking to reach a focused audience of patients and providers.

Quantifiable outcome

• Over 400 attendees at 2023 conference
• +2 more outcomes

Named customers4 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

Integration4 records

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Obesity Action Coalition: OAC advocates for individuals affected by obesity and related conditions and runs education and awareness programs with industry sponsorship. It overlaps with FDRS in the adipose-tissue and weight-stigma space but operates at a broader obesity scale rather than rare fat disorders.

Others

• Obesity Medicine Association: OMA is a professional medical society for clinicians treating obesity and related adipose-related conditions. It is an adjacent stakeholder — a potential partner and conference sponsor for FDRS — rather than a direct competitor, but addresses the same clinician audience.
• The Obesity Society: TOS is the leading scientific society focused on obesity research and treatment. It is adjacent to FDRS's adipose-tissue focus and provides a research and clinical-education reference point that FDRS draws on, but does not compete in rare-disease patient advocacy.

Broad incumbents

• National Organization for Rare Disorders: NORD is a large US umbrella nonprofit for the rare-disease community, providing policy advocacy, patient resources, and research support. It competes indirectly for donor mindshare and offers similar patient-education and advocacy services across all rare diseases, including the conditions FDRS focuses on.
• EveryLife Foundation for Rare Diseases: EveryLife is a rare-disease policy and advocacy nonprofit focused on accelerating biotech innovation for rare conditions. It overlaps with FDRS as a fellow rare-disease advocacy organization but operates at a national policy and legislative level rather than a single-condition clinical community.

Direct peers

• Lymphatic Education & Research Network: LE&RN is a nonprofit focused on lymphatic diseases including lymphedema, which frequently co-occurs with lipedema. It serves an overlapping patient and clinician audience with similar education, advocacy, and conference activities.
• Lipedema Foundation: The Lipedema Foundation is a US nonprofit dedicated specifically to lipedema research, education, and awareness. It directly overlaps FDRS's lipedema mission with a stronger research-funding orientation, making it the closest comparable peer.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q
• Facebookfacebook.com/FatDisorders
• LinkedInlinkedin.com/company/fat-disorders-research-society-inc-

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 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 Fat Disorders Research Society, Inc.