VWD Connect Foundation

What VWD Connect Foundation does

VWD Connect Foundation, Inc. is a Florida-incorporated 501(c)(3) non-profit founded in 2017 and headquartered in Wellington, Florida (West Palm Beach area). It is the only foundation in the United States dedicated exclusively to people living with severe von Willebrand disease (VWD), an ultrarare hereditary bleeding disorder characterized by low or malfunctioning von Willebrand Factor and unpredictable, potentially life-threatening bleeds. The foundation serves three primary constituencies: severe VWD patients, their families and caregivers, and medical professionals and researchers specializing in bleeding disorders. Services are delivered free of charge to members, who are admitted based on a diagnosis of severe VWD and may reside in the U.S. or internationally.

The foundation's core offerings center on community programming rather than a technology product. Its flagship is a four-day annual national conference held every year since 2017 (with virtual editions during COVID-19), supplemented by an annual Provider Education Workshop, a monthly newsletter, YouTube-hosted video presentations, a website resource library (vwdconnect.org), and recurring virtual events including a monthly member meetup, a book club, trivia nights, and educational sessions hosted over Zoom and a private Facebook group. The foundation also supports a patient registry, research sponsorship through its International Medical and Scientific Advisory Board, and a children's educational book titled "Fun Facts about a von Willebrand Warrior." Underlying technology is a standard Squarespace website with YouTube, Zoom, Facebook, and email distribution; no proprietary platform or AI tooling is in evidence.

The foundation is led by Executive Director Jeanette Cesta, supported by a volunteer Board of Directors that includes patient representatives, a CPA, an MSW, and a physician-scientist from Mount Sinai. Revenue is generated entirely through charitable donations from individuals, potential grants, and small fundraising events such as golf tournaments; all services are free to members. With 1-10 employees and no disclosed financials, the organization operates at small non-profit scale.

Name

VWD Connect Foundation

Legal name

VWD Connect Foundation, Inc.

Website

https://vwdconnect.org

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

VWD Connect Foundation is a Florida-based 501(c)(3) non-profit founded in 2017 and the only U.S. foundation dedicated exclusively to people with severe von Willebrand disease, serving patients, families, and medical professionals through free membership, an annual national conference, Provider Education Workshops, virtual events, and a research-focused Medical and Scientific Advisory Board.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Social Advocacy Organizations (8133), Services for the Elderly and Persons with Disabilities (62412), Civic and Social Organizations (813410)

SIC

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

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Patient advocacy foundation
• Bleeding disorder support
• Rare disease education
• Von willebrand disease
• Community health services

Headquarters

HQ city

West Palm Beach

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) non-profit organization, VWD Connect Foundation generates revenue through charitable donations from individuals, potential grants, and fundraising events such as golf tournaments.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

VWD Connect Foundation is a 501(c)(3) non-profit organization that provides education, community events, advocacy, research support, and direct financial assistance to individuals and families affected by severe von Willebrand disease. The foundation operates an annual national conference, provider education workshops, a patient registry, scholarship and travel assistance programs, an emergency Patient Assistance Fund, and educational publications for the severe VWD community.

Product overview

VWD Connect Foundation is a 501(c)(3) non-profit patient advocacy and support organization, not a technology product company. The foundation does not offer a software product, platform, or technology service. Its offerings consist of community support programs including annual national conferences since 2017, Provider Education Workshops, monthly newsletters, video presentations, a resource library, virtual events (Book Club, Member Meetups, Trivia Nights, Educational Sessions), a patient registry, and a children's educational book titled "Fun Facts about a von Willebrand Warrior."

Differentiator

Problem solved

Functional benefit

Products and services

• Annual VWD Connect National Conference

Named customers5 records

Segments3 records

Ideal customer profiles2 records

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• Change the World ProductionsminorStrategic or Co-development PartnerProduction company that produced the foundation's video 'Telling Our Story: Severe VWD and VWD Connect Foundation' which explains the foundation's mission and the patient experience with severe VWD.

Scale indicators4 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): U.S. umbrella advocacy organization for rare diseases, of which severe VWD is one. Comparable in advocacy and patient-support mission, but NORD is a broad multi-disease federation rather than a single-condition specialist.
• National Hemophilia Foundation: The largest U.S. bleeding-disorders patient advocacy nonprofit, serving hemophilia and VWD patients through research, education, and advocacy. Comparable because it overlaps directly with VWD Connect's patient community and event programming, but operates at much larger scale across multiple bleeding disorders.
• Hemophilia Federation of America: U.S.-based bleeding-disorder patient advocacy organization that also supports VWD patients and families. Comparable in mission and member-services model (community, education, advocacy), but covers a broader bleeding-disorder portfolio rather than specializing in severe VWD.
• World Federation of Hemophilia: Global bleeding-disorders organization that addresses VWD internationally across more than 140 countries. Comparable in advocating for and educating the VWD community, but with a global, multi-disease mandate rather than a U.S.-focused severe-VWD niche.
• Sickle Cell Disease Association of America: U.S. patient advocacy organization for sickle cell disease, another inherited blood disorder. Comparable mission and structure (patient education, research support, community events) but operates at significantly larger scale across a broader rare blood disorder.

Direct peers

• Platelet Disorder Support Association: U.S. patient advocacy nonprofit serving people with immune thrombocytopenia (ITP) and other platelet disorders. Comparable as a small, disease-specific foundation providing patient support, education, conferences, and research funding for an ultrarare bleeding-related condition.
• Cooley's Anemia Foundation: U.S. patient advocacy nonprofit dedicated to a specific rare blood disorder (thalassemia). Highly comparable as a small, disease-specific foundation running conferences, research funding, and patient support for an ultrarare inherited blood disorder.
• Foundation for Sarcoidosis Research: U.S. patient advocacy and research nonprofit focused exclusively on sarcoidosis, an ultrarare condition. Highly comparable operating model — small foundation running patient conferences, MSAB-style advisory board, research grants, and educational programming for an ultrarare disease community.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/profile.php
• LinkedInlinkedin.com/company/vwd-connect-foundation-inc

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 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 VWD Connect Foundation