What Acromegaly Community does

Acromegaly Community, Inc. is a 501(c)(3) nonprofit charitable organization (EIN 27-2116493) founded in 2005 and headquartered in Grove, USA. The organization provides emotional and communal support, educational resources, and patient navigation services for individuals affected by acromegaly, a rare endocrine disorder caused by excess growth hormone production. It serves acromegaly patients, their caregivers and family members, and indirectly supports healthcare providers through educational content and specialist referrals. The organization has built a network of 3,800+ patients and caregivers worldwide, with 3,700+ active members in its Facebook support groups spanning 17 countries.

Name

Acromegaly Community

Legal name

Acromegaly Community, Inc.

Website

https://acromegalycommunity.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

Acromegaly Community is a 501(c)(3) nonprofit that provides emotional support, educational resources, and patient navigation services to 3,800+ acromegaly patients and caregivers worldwide across 17 countries.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Rare Disease Support Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Social Assistance (624)

SIC

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

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), Patient Community, Peer Support & Social Engagement (HLACAEAK), Patient Advocacy, Navigation & Access to Care (BPAGACAH)

Keywords

• Rare disease patient advocacy
• Acromegaly support services
• Patient education resources
• Chronic illness community support
• Endocrine disorder support groups

Headquarters

HQ city

Grove

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: The organization operates as a 501(c)(3) nonprofit charity (EIN 27-2116493) funded primarily through charitable donations. The website features a Donorbox donation link at https://donorbox.org/acromegaly-donations.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Acromegaly Community is a 501(c)(3) nonprofit patient advocacy organization that provides an emotional and communal support network for individuals affected by acromegaly. The organization delivers free educational resources, downloadable patient toolkits, multi-language brochures (Acroline), a curated trusted physicians directory, online support groups across multiple countries, annual patient education conferences, and connections to pharmaceutical patient assistance programs.

Product overview

Acromegaly Community is a nonprofit patient advocacy organization offering a comprehensive suite of support services for individuals affected by acromegaly. The organization provides patient support services as its core offering, supplemented by educational resources including Acroline® Booklets and a Patient Toolkit. The Faces of Hope program showcases patient recovery stories, while Patient Education Conferences and Global Support Groups foster community connection. Additional services include Medical Information Resources covering treatment options, Patient Assistance Programs connecting patients to pharmaceutical support, and a Trusted Physicians Directory for specialist referrals.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Support Services Comprehensive support services for acromegaly patients and caregivers, including FAQs, advocacy resources, a patient toolkit, laboratory information, mental health support, and pain management resources.
• Acroline Booklets Informative guides and tools developed with acromegaly groups from around the world, available in several languages. Includes topics such as supporting people with acromegaly, long-term implications, patient wellbeing, and self-image.
• Faces of Hope Patient advocacy program showcasing photo stories of individuals who have found hope and recovery through acromegaly treatments including surgery, medication, and radiation.
• Patient Education Conferences Annual and regional patient education conferences (hybrid format) featuring expert medical speakers and peer support, including the International Acromegaly Community Conference and Patient Acromegaly Day events.
• Global Support Groups Worldwide network of moderated online acromegaly support groups organized by country, region, and demographic (gender-specific, caregivers, fitness), connecting patients and caregivers for peer support.
• Medical Information Resources Detailed educational content about acromegaly including disease overview, treatment options (surgery, radiation, medication), prescription details, and clinical trial listings.
• Patient Assistance Programs Referral service connecting patients with pharmaceutical patient assistance programs including CrinetiCARE, Mycapssa, R.A.R.E. Patient Support Program, and Pfizer Bridge Program for medication cost support.
• Trusted Physicians Directory Curated global interactive map and directory of endocrinologists, neurosurgeons, neurologists, psychiatrists, otolaryngologists, and other acromegaly-experienced specialists vetted from patient recommendations since 2009.

Quantifiable outcome

• Over 3,800 patients and caregivers served worldwide
• +2 more outcomes

Named customers2 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

Feature3 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• Barrow Neurological InstitutecoreStrategic or Co-development Partner · 16 October 2026Barrow Neurological Institute in Phoenix, Arizona is hosting the 2026 International Patient Education Conference October 16-18. This is a major annual event bringing together acromegaly patients, caregivers, and healthcare professionals.
• NYU Langone HealthcoreStrategic or Co-development Partner · 13 March 2026NYU Langone Health is hosting Patient Acromegaly Day on March 13, 2026, a free virtual event designed for patients and caregivers offering education on living with acromegaly, treatment options, managing daily symptoms, mental well-being, and expert connections.
• Planet TV StudiosminorGTM or Marketing PartnerPlanet TV Studios produced a New Frontiers documentary segment featuring Acromegaly Community Inc., scheduled to air on Fox Business in Q1 2025, hosted by Gina Grad.
• PfizercoreGTM or Marketing PartnerPfizer collaborated with the organization to create Acroline brochures - informative guides available in multiple languages. Pfizer also provides Somavert patient assistance through the Pfizer Bridge Program, the Acrotracker health monitoring app, and Patient Affairs Liaison support.
• Crinetics PharmaceuticalscoreGTM or Marketing PartnerCrinetics provides CrinetiCARE, a comprehensive patient support program for PALSONIFY including financial support (copay assistance up to $25,000/year, patient assistance for uninsured), nurse educators, healthcare provider locator, and specialty pharmacy coordination.
• ChiesicoreGTM or Marketing PartnerChiesi provides Mycapssa (octreotide) patient support through Chiesi Total Care, including $0 copay for eligible commercially insured patients, insurance approval assistance, appeals support, and Patient Education Liaisons.
• Recordati Rare DiseasescoreGTM or Marketing PartnerRecordati Rare Diseases administers the R.A.R.E. Patient Support Program for SIGNIFOR LAR, offering $20 copay for qualified patients with commercial insurance, home injection program, insurance verification, prior authorization support, and clinical nurse support.
• Miracle FlightsminorGTM or Marketing PartnerMiracle Flights is a nonprofit organization providing free flights for patients with serious illnesses to access life-altering medical treatment and expert opinions. Referenced as a travel assistance resource for acromegaly patients traveling for treatment.
• Pituitary SocietycoreStrategic or Co-development PartnerThe Pituitary Society collaborated with Acromegaly Community for the 2019 Patient Conference held in New Orleans, LA, combining patient education with professional medical society expertise.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Rare Patient Voice: Rare Patient Voice is a research-services company that recruits patients with rare diseases (including acromegaly) for paid market research and clinical-trial referral opportunities. It is an emerging player that competes indirectly for the same patient-attention pool and pharma-partner relationships.

Direct peers

• Pituitary Network Association: The Pituitary Network Association is a 501(c)(3) nonprofit that supports patients with pituitary disorders, including acromegaly. It is the closest direct peer, offering condition-specific education, physician directories, support groups, and conferences for the same patient population.
• MAGIC Foundation: MAGIC Foundation is a nonprofit providing education, support, and resources for families affected by children's growth disorders, including acromegaly and gigantism. It is a direct peer serving overlapping patient populations with a similar support-and-education model.
• Cushing's Support & Research Foundation: CSRF is a nonprofit supporting patients with Cushing's disease, another pituitary/endocrine disorder often treated by the same specialists who treat acromegaly. It operates a highly analogous disease-specific support, education, and physician-referral model for a closely related rare endocrine condition.
• Hypoparathyroidism Association (HPTH Association): The Hypoparathyroidism Association is a small disease-specific patient advocacy nonprofit that runs support groups, educational resources, and physician referrals. It is a direct peer operating an essentially identical model (rare endocrine disease, online community, physician directory, conferences) at a similar small scale.
• World Alliance of Pituitary Organizations (WAPO): WAPO is an international umbrella of pituitary patient organizations, with members representing acromegaly patients in dozens of countries. It is a direct peer operating in the same niche with a comparable mission of global patient support, education, and advocacy.

Broad incumbents

• Endocrine Society: The Endocrine Society is the largest professional organization for endocrinologists globally, including those managing acromegaly. It is a broad incumbent in the same disease space and operates the Hormone Health Network, but is clinician-focused rather than a patient community.
• National Organization for Rare Disorders (NORD): NORD is the largest US rare-disease umbrella nonprofit, aggregating advocacy and patient services across hundreds of conditions including acromegaly. It is a broad incumbent that overlaps on advocacy, patient assistance, and rare-disease awareness, but lacks the acromegaly-specific depth of the subject company.
• American Thyroid Association (ATA) Patient Resources: The ATA is a professional medical society that also publishes patient-facing thyroid education, disease information, and physician-finding tools. It is a broad incumbent in an adjacent endocrine disease space using a similar physician + patient information model.
• Pituitary Society: The Pituitary Society is the global professional medical society for pituitary specialists who treat acromegaly. It is a broad incumbent in the same disease ecosystem and a strategic partner of the subject company (co-hosted 2019 patient conference), but its primary audience is clinicians rather than patients.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCyKtHdGEY0oPNp93dKeqHkg
• Xx.com/AcroCommunity
• Facebookfacebook.com/acromegaly
• LinkedInlinkedin.com/company/acromegaly-community

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 Acromegaly Community