Adrenal Insufficiency United

What Adrenal Insufficiency United does

Adrenal Insufficiency United is a 501(c)(3) nonprofit organization founded in 2011, headquartered in Astoria/Florence, Oregon, that serves patients living with adrenal insufficiency and adrenal disease, along with their caregivers and healthcare providers. The organization's core function is patient advocacy, education, and peer support for this rare disease community. Its primary products and services include a WordPress-based educational website, a resource library with content tailored for schools and healthcare providers, moderated Facebook support groups totaling over 12,000 members, an annual patient conference (4th edition in 2026), and a merchandise-based online store. Technology infrastructure is deliberately minimal, relying on commodity web platforms and social media rather than proprietary systems.

The organization's business model is a multi-stream nonprofit revenue structure. Funding derives from individual donations, recurring memberships priced at $3/month or $24/year, merchandise sales, event registration fees, and grants/sponsorships from pharmaceutical companies with relevant therapeutic interests (Neurocrine Biosciences, Esteve, Eton Pharmaceuticals, Crinetics Pharmaceuticals, BridgeBio Pharma). Additional fundraising is conducted via HundredX and GoFundMe campaigns. The organization is volunteer-run with 1-10 personnel and a part-time executive director compensated at a $15,000 annual stipend, indicating minimal fixed operating costs. Strategic priorities include regulatory advocacy (19+ state EMS protocol updates, Oregon K-12 legislation) and ecosystem partnerships with peer organizations including NADF, ALD Connect, Global Genes, NORD, and Danny's Dose.

Revenue concentration on a small number of pharmaceutical sponsors represents the primary financial risk, as individual memberships and donations likely constitute a long-tail but small-dollar base. The organization has demonstrated 15 years of operational continuity and incremental expansion of both regulatory footprint and partnership network, though it lacks the scale, capital base, and technology differentiation typical of venture-backed entities.

Name

Adrenal Insufficiency United

Legal name

Adrenal Insufficiency United

Website

https://aiunited.org

Company type

Private

Founded year

2011

Operating status

Operating

Headcount range

1–10 employees

Short description

Adrenal Insufficiency United is a 501(c)(3) nonprofit founded in 2011 that provides advocacy, education, and peer support to patients with adrenal insufficiency through online resources, 12,000+ member Facebook groups, annual conferences, and regulatory work across 19+ U.S. states.

Ownership category

akta.pro rank

Headquarters

HQ city

Astoria

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: AIU accepts donations via PayPal, Venmo, Stripe, and checks. Donations support all organizational activities including emergency protocols, educational resources, legislative efforts, conferences, and community support.
2. Membership Subscriptions: After a 1-month free trial, members pay $3/month or $24/year. Benefits include access to free downloads, Zoom meetings, webinars, and private group forums.
3. Merchandise Sales: AIU operates an online store (aiunitedstore.org) selling products including emergency kits and related items. Revenue supports store maintenance and shipping costs.
4. Corporate Sponsorships: Pharmaceutical companies including Neurocrine, Esteve, Eton Pharmaceuticals, Crinetics, and BridgeBio provide sponsorship at various levels (Producer, Patron, Advocate, Friend) for conferences and organizational activities.
5. Fundraising Campaigns: AIU partners with HundredX platform where survey completions generate $1.60 per survey for the organization. Also accepts funds from GoFundMe, Facebook Fundraisers, and MightyCause.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels11 records

Core offering

Adrenal Insufficiency United (AIU) is a 501(c)(3) nonprofit that supports individuals and caregivers affected by adrenal insufficiency through community programs, educational resources, and legislative advocacy. Its paid offerings include a recurring membership program with monthly and annual subscription tiers, an annual three-day patient conference held in-person and virtually, and a merchandise store selling kits and educational items. Free offerings include moderated Facebook support groups, a downloadable resource library, and emergency preparedness and school accommodation materials.

Product overview

Adrenal Insufficiency United (AIU) is a nonprofit organization (501(c)(3)) offering a suite of support services and educational resources for individuals and caregivers affected by adrenal insufficiency. The organization's primary offering is its website platform (aiunited.org), which serves as a hub for the adrenal insufficiency community. Core services include online Facebook support groups (Adrenal Insufficiency Support, Parents & Caregivers of Children with AI, Caregiver/Supporter of an adult with AI), annual patient conferences (AIU Summit), and a comprehensive Resource Library with emergency preparedness materials and state-specific EMS protocols. Additional offerings include a Membership Program ($3/month or $24/year) providing access to exclusive downloads, Zoom meetings, webinars, and private forums; School Resources Program with IEP/504 guidance and downloadable materials; Healthcare Provider Resources; an AIU Store for merchandise; and a monthly Newsletter. The organization also runs advocacy efforts including ER/EMS working groups and legislative initiatives, with funding supported through donations and sponsorships from pharmaceutical companies.

Differentiator

Problem solved

Functional benefit

Products and services

• AIU Membership Program

Quantifiable outcome

• Emergency protocols enabled in 19+ states for ER/EMS treatment of adrenal crisis
• +1 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Danny's DosecoreStrategic or Co-development PartnerAIU collaborates with Danny's Dose Alliance to create inclusive protocols for emergency treatment of patients with specialty medications. Co-founder Darlene Shelton works on EMS protocol updates, with 19 states having updated protocols to date. Danny's Dose focuses on modernizing EMS protocols, developing disease-specific treatment guidelines, and equipping patients with emergency preparedness education.
• National Adrenal Diseases Foundation (NADF)coreStrategic or Co-development PartnerAIU and NADF collaborate to help organize in-person support group gatherings across the U.S. NADF hosts local support groups and AIU provides resources and community support.
• Cushing's Support and Research Foundation (CSRF)minorStrategic or Co-development PartnerAIU partnered with CSRF to share conference expenses in 2023. Both organizations serve related endocrine communities and collaborate on educational events.
• ALD ConnectminorStrategic or Co-development PartnerALD Connect is a consortium focused on adrenoleukodystrophy (ALD). ALD Connect joins AIU's 2026 Saturday conference sessions. AIU refers patients with ALD-related adrenal insufficiency to ALD Connect resources.
• Global GenesminorStrategic or Co-development PartnerGlobal Genes provides hope for the more than 400 million people affected by rare disease. AIU volunteer representatives attend Global Genes annual conferences as part of community outreach.
• National Organization for Rare Disorders (NORD)minorStrategic or Co-development PartnerNORD is a nonprofit representing rare disease patients and organizations. AIU volunteer representatives attend NORD events and conferences as part of advocacy and awareness initiatives.
• CAH IS USminorOthersCAH IS US provides educational resources about congenital adrenal hyperplasia including guides on plasma renin activity, fludrocortisone, hydrocortisone dosing, circadian rhythm dosing, and pump methods. AIU links to these resources in their educational content.
• Harmony 4 HopeminorStrategic or Co-development PartnerHarmony 4 Hope uses music and storytelling to fuel scientific discoveries in rare disease, educate future physicians and researchers, and unite rare disease communities.
• Team IMPACTminorStrategic or Co-development PartnerTeam IMPACT matches children with life-threatening or chronic illnesses with college sports teams. AIU supports families who may benefit from this program.
• Let's Cure ACCminorStrategic or Co-development PartnerLet's Cure ACC supports those diagnosed with adrenocortical carcinoma, a rare cancer affecting about one in one million people. AIU lists them as a partner organization for related conditions.
• HundredXminorGTM or Marketing PartnerHundredX platform partnership where AIU supporters complete brand surveys and $1.60 per survey is donated to AIU. Participants can earn prizes, store discounts, and early access to AIU sales.
• Danny's Dose EMR InitiativecoreStrategic or Co-development PartnerChristine Yedinak serves as medical advisor for Danny's Dose EMR Initiative for Adrenal Insufficiency, bridging organizational collaboration on emergency medical response guidelines.

Scale indicators5 records

Recent moves8 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest U.S. umbrella advocacy organization for rare diseases. AIU is an active attendee and member of NORD events, positioning NORD as both a partner and a broader incumbent that influences policy and funding across AIU's disease space.
• Global Genes: Major rare-disease advocacy umbrella serving 400M+ patients globally. AIU representatives attend Global Genes conferences as community outreach, making it an adjacent incumbent with overlapping mission but broader disease scope.

Direct peers

• Magic Foundation: Large rare-endocrine patient-advocacy organization covering growth disorders and adrenal/pituitary conditions. Operates conferences, support networks, and clinician resources with significant overlap in audience and programming structure.
• Pituitary Network Association: Patient advocacy and education organization for pituitary disorders — a closely adjacent clinical category, since secondary/tertiary adrenal insufficiency is caused by pituitary dysfunction. Targets a heavily overlapping patient and clinician audience.
• National Adrenal Diseases Foundation (NADF): The most directly comparable peer: a 501(c)(3) patient-advocacy organization serving the adrenal disease community, with a longer operating history. NADF hosts local support groups, offers patient education, and is explicitly listed as a core AIU partner, indicating overlapping mission, audience, and programs.
• CARES Foundation (Congenital Adrenal Hyperplasia): Patient-advocacy nonprofit focused on congenital adrenal hyperplasia, one of the primary causes of adrenal insufficiency in children. Serves a subset of AIU's patient base with a similar education, support, and advocacy model.
• Cushing's Support and Research Foundation (CSRF): Closely related endocrine patient-advocacy nonprofit. AIU partnered with CSRF in 2023 to share conference expenses, demonstrating overlapping audiences (pituitary/adrenal patients) and a comparable model of patient conferences and educational programming.
• Danny's Dose Alliance: Advocacy organization focused on modernizing EMS protocols and emergency preparedness for patients with specialty medications. Functions as a close operating partner of AIU and shares the regulatory-advocacy value proposition.

Regional players

• ALD Connect: Consortium focused on adrenoleukodystrophy, a condition with significant adrenal insufficiency comorbidity. Partners with AIU on the 2026 Saturday conference sessions, sharing a U.S.-based patient population with AI involvement.

Others

• Harmony 4 Hope: Rare-disease nonprofit that uses music and storytelling to support community-building and physician education. A thematic peer in the broader rare-disease advocacy ecosystem with which AIU maintains a formal partnership.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/AI_United
• YouTubeyoutube.com/channel/UCGpE8b0ArFLJaWEmA4JqnTA
• Facebookfacebook.com/AIUnited
• LinkedInlinkedin.com/company/adrenal-insufficiency-united
• Instagraminstagram.com/aiunited
• Pinterestpinterest.com/aiunited

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Adrenal Insufficiency United