Heterotaxy Connection

What Heterotaxy Connection does

Heterotaxy Connection is a private, Utah-based 501(c)(3) patient advocacy organization serving individuals and families affected by Heterotaxy syndrome, a rare congenital condition affecting approximately 1 in 10,000 people. Founded by two mothers (Necia Sabin and Heather) who connected while searching for answers about the condition, the organization operates an international community spanning patients, families, clinicians, and researchers, and is led by Executive Director Necia Sabin alongside Director of Programs and Community Engagement Rene Harrell. Its core offerings include the Interactive Body Map web tool, biannual virtual and annual in-person 'Facing Heterotaxy Together' conferences (with locations locked through 2030), the Family Advisory Council with four working groups, Peer Support matching, bereavement support, and condition-specific content including a 2022 Consensus Paper and 8-feature Diagnostic Criteria document. Strategic partnerships anchor the organization's research and registry efforts, most notably with Citizen Health (Natural History Registry), HRC3 (clinician collaborative), Boston Children's Hospital, NORD, PCD Foundation, RDCRN, GDmCC, Global Genes, Gabriella Miller Kids First, and Chan Zuckerberg Initiative.

The organization's revenue model is a hybrid nonprofit stack combining donation-driven funding with modest transactional streams. Recurring and one-time donations flow through Network for Good, including the 'Together We Thrive Monthly' giving program. Conference registration fees are publicly disclosed at three tiers: Clinicians $50, Trainees/Students $25, and Families/Caregivers $25. Merchandise revenue is generated through the Shop HC storefront, operated as a print-on-demand storefront via Print Your Cause. The organization does not develop proprietary technology; its digital footprint is built on Squarespace, base44.app (Interactive Body Map), and the Citizen Health registry platform, supplemented by organic social channels (Facebook public page, moderated private group, Instagram, LinkedIn) and an email newsletter. No AI/ML capabilities, patents, funding rounds, M&A activity, or executive hires beyond the founder-led leadership team are disclosed in the source data, and no revenue or headcount figures are publicly available.

Name

Heterotaxy Connection

Legal name

Heterotaxy Connection

Website

https://heterotaxy.org

Company type

Private

Operating status

Operating

Short description

Heterotaxy Connection is a US-based 501(c)(3) patient advocacy organization serving the global Heterotaxy syndrome community (~1 in 10,000 prevalence) through education, peer support, conferences, content, and a patient registry.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Other Individual and Family Services (624190), Social Assistance (624)

SIC

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

akta.pro industry

PRIMARYHLAJAOAL

Health Systems Strengthening & Universal Health Coverage (UHC) Partnerships

Healthcare & Life Sciences/Public Health, Government & Regulators/Global Health Initiatives & Partnerships

Keywords

• Rare disease advocacy
• Patient support services
• Family peer mentoring
• Medical conference hosting
• Natural history registry

Headquarters

HQ city

Lehi

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Sponsorships: The organization relies heavily on donations from individuals and corporate sponsors. They operate a monthly giving program (Together We Thrive Monthly) and accept one-time donations. Sponsorships support community programs and research initiatives.
2. Conference Registration: Revenue generated from conference registrations including the annual Facing Heterotaxy Together conference. Registration tiers include Clinicians ($50), Students/Trainees ($25), and Families/Caregivers ($25).
3. Merchandise Sales: Sales of apparel and accessories through the Shop HC platform, including Heterotaxy Awareness Day merchandise and family apparel collections, to spread awareness and generate revenue.
4. Family Programs: Family Advisory Council working groups and peer support programs, which engage volunteers but may also generate revenue through program participation and related activities.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels10 records

Core offering

Heterotaxy Connection is a patient advocacy nonprofit that supports individuals and families affected by Heterotaxy syndrome through educational resources, community programs, an annual Facing Heterotaxy Together conference series, and a Natural History Registry. Core offerings include the Interactive Body Map web tool, the Family Advisory Council and Peer Support program, the Heterotaxy Consensus Paper and diagnostic resources, and merchandise sales through Shop HC. Revenue is generated primarily through donations, sponsorships, conference registrations, and merchandise sales.

Product overview

Heterotaxy Connection is a patient advocacy organization offering a comprehensive ecosystem of resources, programs, and events for individuals and families affected by Heterotaxy syndrome. The portfolio centers on the Interactive Body Map web tool for anatomy education, annual Facing Heterotaxy Together conferences (alternating between virtual and in-person formats), and the Natural History Registry partnership with Citizen Health for patient data sharing. Supporting offerings include educational resources such as the peer-reviewed Consensus Paper, diagnostic criteria documents, and tri-fold brochures; community programs including the Family Advisory Council with four working groups, Peer Support matching, and bereavement support; and advocacy initiatives such as Awareness Day, Remembrance Day, and proclamation requests. All offerings work together to advance research, improve outcomes, and strengthen support networks within the Heterotaxy community.

Differentiator

Problem solved

Functional benefit

Products and services

• Facing Heterotaxy Together Virtual Conference Annual virtual conference uniting clinicians and families for scientific presentations, research updates, and family-focused sessions. Registration is tiered: Clinicians $50, Students/Trainees $25, Families/Caregivers $25.
• Facing Heterotaxy Together In-Person Conference Biennial in-person scientific and family conference co-developed with medical institutions (e.g., Boston Children's Hospital 2025), held in rotating U.S. locations such as Dallas (2027) and Denver (2029).
• Interactive Body Map Web-based interactive tool that helps clarify human anatomy and describes how each body system can be impacted by Heterotaxy; available at body-map-wise.base44.app.
• Peer Support Program Peer mentorship program that connects newly diagnosed individuals and families with experienced mentors who have navigated the Heterotaxy journey.
• Natural History Registry (Citizen Health partnership) HIPAA-compliant patient-driven registry platform powered by Citizen Health that allows individuals and families to share medical data, consolidate records from all providers, and contribute to research.
• Family Programs Suite of family support programs including the Family Advisory Council, peer support matching, bereavement support, educational webinars, and family workshops on topics such as IEP/504 school plans and advocacy.
• Family Advisory Council (FAC) Volunteer council of Heterotaxy parents and adults who partner with Heterotaxy Connection to shape projects, programs, resources, and partnerships; operates across four working groups (Family Support & Engagement, Education & Resource Development, Bereavement Care, Research & Innovation).
• Advocacy and Awareness Programs National awareness campaigns including Heterotaxy Awareness Day (May 4th), Remembrance Day (November 4th), awareness proclamations, storytelling initiatives, and community fundraising events.
• Conference Recordings Library Online archive of past Facing Heterotaxy Together conference sessions covering topics such as genetics, cardiac surgery, pulmonology, ciliary dysfunction, and family experiences.
• Shop HC Merchandise Merchandise storefront of awareness apparel and accessories, including Heterotaxy Awareness Day merchandise, operated through the Print Your Cause platform to spread awareness and generate revenue.

Quantifiable outcome

• Biannual scientific conferences bringing together families, clinicians, and researchers
• +2 more outcomes

Named customers4 records

Segments4 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.

• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerHeterotaxy Connection is an active member of NORD, the primary organization representing the rare disease community. This membership provides advocacy support, resources, and visibility for the Heterotaxy community within the broader rare disease ecosystem.
• PCD FoundationcoreStrategic or Co-development PartnerPartnership with the Primary Ciliary Dyskinesia Foundation due to the overlap between PCD and Heterotaxy conditions, particularly regarding ciliary dysfunction and respiratory concerns.
• Rare Diseases Clinical Research NetworkcoreStrategic or Co-development PartnerCollaboration with the Rare Diseases Clinical Research Network to advance clinical research and connect patients with research opportunities in Heterotaxy.
• Genetic Diseases of Mucociliary Clearance ConsortiumcoreStrategic or Co-development PartnerPartnership with the GDmCC consortium focusing on research into genetic diseases affecting mucociliary clearance, relevant to Heterotaxy patients with respiratory complications.
• Global GenesminorStrategic or Co-development PartnerAlliance with Global Genes, a rare disease advocacy organization, to amplify awareness and resources for the Heterotaxy community.
• Gabriella Miller Kids FirstminorStrategic or Co-development PartnerPartnership with the Gabriella Miller Kids First research program supporting pediatric rare disease research including Congenital Heart Defects and heterotaxy-related conditions.
• Chan Zuckerberg InitiativeminorStrategic or Co-development PartnerCollaboration with the Chan Zuckerberg Initiative supporting rare disease research and data sharing initiatives.
• Citizen HealthcoreTechnology or IntegrationPartnership to power the Heterotaxy Natural History Registry, a secure patient-driven platform allowing individuals and families to share medical data to advance research and improve care through the Citizen Health HIPAA-compliant platform.
• Heterotaxy Research and Clinical Care Collaborative (HRC3)coreStrategic or Co-development PartnerCore collaboration with HRC3, a dedicated group of clinicians working together to advance diagnosis and treatment of Heterotaxy. HRC3 collaborates on the annual Facing Heterotaxy Together conferences and research initiatives.
• Benderson Family Heart Center at Boston Children's HospitalcoreStrategic or Co-development PartnerHost partner for the 2025 in-person conference, partnering with Boston Children's Hospital's renowned cardiac center for combined scientific and family conference.
• Claire the Heart Warrior FoundationminorStrategic or Co-development PartnerPartnership with another heart-focused foundation to support the Heterotaxy community and shared advocacy efforts.
• Utah Nonprofits AssociationminorStrategic or Co-development PartnerMembership in the Utah Nonprofits Association supporting organizational development and compliance for the Utah-based nonprofit.

Scale indicators3 records

Recent moves4 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): U.S. umbrella advocacy organization representing the rare disease community; Heterotaxy Connection is an active NORD member and comparable in advocacy/policy positioning, but NORD operates across all rare diseases rather than a single condition.
• Global Genes: International rare disease advocacy organization and stated Heterotaxy Connection partner; comparable in awareness campaigns, patient toolkits, and community-building initiatives across the broader rare disease spectrum.
• EveryLife Foundation for Rare Diseases: U.S. rare disease policy and advocacy nonprofit that complements condition-specific organizations like Heterotaxy Connection through federal policy work, newborn screening advocacy, and rare disease patient community building.
• EURORDIS - Rare Diseases Europe: European alliance of rare disease patient organizations; comparable as a pan-rare-disease umbrella serving as a complement for Heterotaxy Connection's international community engagement and rare disease policy positioning.

Direct peers

• Children's Heart Foundation: U.S. nonprofit focused on congenital heart defects research and family support; directly comparable as a condition-specific cardiac patient advocacy organization that funds research, runs programs, and convenes families affected by heterotaxy-relevant conditions.
• Adult Congenital Heart Association: Advocacy and support organization for adults living with congenital heart disease (CHD), including Heterotaxy spectrum conditions; comparable patient education, conference programming, and clinician engagement model.
• Mended Hearts: National peer-support and advocacy nonprofit for patients with congenital and acquired heart disease; directly comparable in family/caregiver support programs, hospital partnerships, and cardiac patient education offerings relevant to Heterotaxy families.
• PCD Foundation: Patient advocacy organization for Primary Ciliary Dyskinesia, a rare congenital condition that overlaps clinically with Heterotaxy and shares a stated partnership; comparable in mission, patient/family support programs, and conference-driven community model.

Others

• Citizen Health: Technology platform powering the Heterotaxy Natural History Registry; an enabling ecosystem provider that builds patient-driven health record and registry infrastructure used by multiple rare disease advocacy organizations.

Regional players

• Rare Disease United Foundation: U.S.-focused rare disease advocacy community building foundation supporting condition-specific patient organizations with awareness, fundraising infrastructure, and community programs comparable to those run by Heterotaxy Connection.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/heterotaxyconnection
• LinkedInlinkedin.com/company/heterotaxy-connection
• Instagraminstagram.com/heterotaxyconnection

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 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 Heterotaxy Connection