Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

What Lymphangiomatosis & Gorham's Disease Alliance (LGDA) does

The Lymphatic Malformations Alliance, formerly known as the Lymphangiomatosis & Gorham's Disease Alliance (LGDA), is a 501(c)(3) non-profit patient advocacy organization founded in 2007 and headquartered in St. Petersburg, Florida. Rebranded from LGDA to the Lymphatic Malformations Alliance in July 2026, the organization serves patients with isolated lymphatic malformations and complex lymphatic anomalies, along with their families, clinicians, and researchers. Its core offerings are a patient education platform and community engagement tools built around an integrated portfolio of patient guides (including the CLA Patient Guide downloaded in 51 countries), a patient registry, a clinical trials portal, a physician finder, a CLA Peer-to-Peer Program, learning videos, and a Research Grants Program that has cumulatively raised over $1M for research.

The organization operates a community-led, event-driven, and direct-to-consumer go-to-market model, distributing free educational content and support services through its website (lmalliance.org), email newsletter, and social media channels on Facebook, X, Instagram, LinkedIn, and YouTube. It is governed by a Board of Directors with input from a Medical & Scientific Advisory Council and a Patient & Community Advisory Council. The organization is a NORD 2025 Platinum member, holds a GuideStar Transparency Seal, and has established strategic partnerships with rare disease pharmaceutical and biotech companies including Palvella, Novartis, Protara, and Relay to advance research and clinical trial collaboration.

The business model is non-commercial: revenue is generated entirely through charitable donations from individuals, families, and supporters, processed via the GiveLively platform, with donations tax-deductible under the organization's 501(c)(3) status (Federal EIN 26-1224181). The organization has 1-10 employees and does not charge for any of its services. Funding flows primarily into research grants, educational content development, and patient support programs, with global reach across at least 51 countries for educational content distribution.

Name

Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

Legal name

Lymphangiomatosis & Gorham's Disease Alliance Inc.

Website

https://lgdalliance.org

Company type

Private

Founded year

2007

Operating status

Operating

Headcount range

1–10 employees

Short description

The Lymphatic Malformations Alliance (formerly LGDA) is a 501(c)(3) non-profit that supports patients with isolated lymphatic malformations and complex lymphatic anomalies through patient guides, peer support, a patient registry, a clinical trials portal, a physician finder, and a research grants program, funded by charitable donations.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy Services

NAICS

Other Individual and Family Services (624190), Social Assistance (624), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090)

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

• Rare disease advocacy
• Patient support services
• Lymphatic anomaly research
• Nonprofit health education
• Patient registry platform

Headquarters

HQ city

St. Petersburg

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) charitable organization, the primary revenue stream comes from donations from individuals, families, and supporters. The Federal ID# is 26-1224181. Donations are processed through GiveLively platform.

Go-to-market motion3 records

Distribution channels5 records

Marketing channels11 records

Core offering

The Lymphatic Malformations Alliance provides free patient education resources (including the CLA Patient Guide downloaded in 51 countries), peer-to-peer support programs, a patient registry, a clinical trials platform, a physician finder directory, a research grants program (over $1 million raised), and learning videos for patients, families, clinicians, and researchers affected by isolated lymphatic malformations and complex lymphatic anomalies.

Product overview

The Lymphatic Malformations Alliance (formerly LGDA) operates as a patient advocacy and research non-profit organization offering a unified portfolio of educational resources, support services, and research tools. The core offerings include patient guides (CLA Patient Guide, Understanding Isolated Lymphatic Malformations Guide), peer support programs (CLA Peer-to-Peer Program), clinical resources (Finding a Physician, Clinical Trials Platform), and research infrastructure (Patient Registry, Research Grants Program). The organization also provides learning videos and emotional well-being resources for patients, families, caregivers, teens, and children. These services work together to fulfill the mission of bringing clarity, connection, and progress to those affected by lymphatic malformations.

Differentiator

Problem solved

Functional benefit

Products and services

• CLA Patient Guide

Quantifiable outcome

• Over $1 Million raised for research
• +1 more outcomes

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

Six partnerships are on record, tiered minor and core.

• PalvellaminorStrategic or Co-development PartnerPharmaceutical partner collaborating with the Lymphatic Malformations Alliance. Palvella is a company focused on rare disease therapeutics.
• NovartisminorStrategic or Co-development PartnerGlobal pharmaceutical company partner collaborating with the alliance. Novartis develops medicines for a variety of diseases including rare conditions.
• ProtaraminorStrategic or Co-development PartnerPharmaceutical partner working with the alliance. Protara focuses on rare disease therapeutics.
• RelayminorStrategic or Co-development PartnerBiotechnology company partner collaborating with the alliance on rare disease research.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerNORD 2025 Member Platinum designation. NORD is a leading independent organization representing the rare disease community in the United States. The alliance is recognized as a Platinum member, indicating significant engagement and support within the rare disease ecosystem.
• GuidestarminorOthersGuideStar, now Candid, provides transparency verification for non-profits. The alliance holds a GuideStar Transparency Seal demonstrating commitment to organizational transparency.

Scale indicators3 records

Recent moves5 records

Expansion highlights5 records

Direct peers

• Children's Tumor Foundation: Leading nonprofit for neurofibromatosis (NF), a rare genetic disorder. Comparable as a mature disease-specific rare disease advocacy organization running research grants, patient registries, clinical trial infrastructure, and global awareness—offering a benchmark for the alliance's growth trajectory in the rare vascular/genetic disease niche.
• Sturge-Weber Foundation: Nonprofit supporting individuals with Sturge-Weber Syndrome and port-wine stain birthmarks, a rare vascular condition. Comparable as a disease-specific rare vascular disorder advocacy nonprofit running research grants, patient registry, clinical trial connections, and educational programs aimed at patients, families, and clinicians.
• Klippel-Trenaunay Syndrome Support Group: Patient advocacy organization for Klippel-Trenaunay Syndrome, a rare vascular malformation disorder. Highly comparable as a small, volunteer-led rare vascular malformation nonprofit offering peer support, physician directories, educational content, and research connections—mirroring the alliance's operating model.
• Lymphatic Education & Research Network (LE&RN): Another U.S.-based nonprofit focused on lymphatic diseases, providing education, research funding, and patient advocacy. Directly comparable as the most prominent peer patient advocacy organization in the lymphatic disease space, though its scope is broader (all lymphatic diseases vs. the alliance's focus on malformations/anomalies).
• Cure HHT Foundation: Nonprofit dedicated to Hereditary Hemorrhagic Telangiectasia (HHT), another rare vascular anomaly condition. Comparable as a disease-specific rare vascular anomaly advocacy organization with research grants, patient registry, clinical trial listings, and educational guides—operating with a similarly small staff model.
• Vascular Anomalies Center alliances (e.g., HHT Foundation International): Disease-specific and vascular anomaly-focused rare disease nonprofits. Comparable as peer organizations serving the same vascular anomaly clinical ecosystem, often cross-referring patients through shared physician finder directories and physician finder tools.

Broad incumbents

• EveryLife Foundation for Rare Diseases: Public policy advocacy nonprofit focused on accelerating biotech innovation for rare diseases. Comparable as a rare disease advocacy peer operating in adjacent ecosystem capacity (policy, regulatory advocacy) and frequently intersecting with disease-specific orgs like the alliance on legislative initiatives such as the Orphan Drug Act.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing the rare disease community in the U.S. The alliance holds NORD Platinum membership, indicating NORD operates as an umbrella incumbent that the alliance both partners with and is shaped by. Comparable as a rare disease advocacy nonprofit with research grant and education programs, but at far greater scale and scope.

Emerging players

• CMTC Alliance: Nonprofit supporting individuals with Cutis Marmorata Telangiectatica Congenita and other vascular malformations. Comparable as a small, emerging rare vascular malformation patient advocacy organization with similar programs (peer support, research connections, education) and a comparable scale and operating model.
• PHACE Syndrome Community: Small nonprofit serving the PHACE syndrome community, another rare vascular anomaly condition. Comparable as an emerging rare vascular anomaly advocacy organization running patient education, peer connections, and physician finder services with a small operating team.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/LM_Alliance
• YouTubeyoutube.com/@LymphaticMalformation
• Facebookfacebook.com/lmalliance.org
• LinkedInlinkedin.com/company/lgdalliance
• Instagraminstagram.com/lymphaticmalformation

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 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 Lymphangiomatosis & Gorham's Disease Alliance (LGDA)