Dravet Syndrome Foundation

Rare Disease Patient Advocacy and Research Fundingdravetfoundation.org

Dravet Syndrome Foundation is a 501(c)(3) nonprofit that funds Dravet syndrome research and provides free family support, education, and advocacy services to U.S. patients, caregivers, and clinicians through a community-led platform.

Company typePrivate
Founded2009
HeadquartersCherry Hill, United States
Headcount11–50
GTM typeB2C
OfferingServices

What Dravet Syndrome Foundation does

Dravet Syndrome Foundation (DSF), legally Dravet Syndrome Foundation, Inc. (FEIN #27-0924627), is a 501(c)(3) nonprofit organization headquartered in Cherry Hill, New Jersey, founded in 2009 by a group of parents of children with Dravet syndrome — a rare, severe genetic epilepsy with an estimated incidence of 1:15,700. The foundation operates a community-led go-to-market model that funds biomedical research and delivers direct support services to patients, families, and caregivers affected by the disease.

DSF's core product is a website-centric platform (dravetfoundation.org) that bundles multiple integrated service lines: a research grant program (Transformational Science Grants, Research Grants, Clinical Research Grants, Postdoctoral Fellowships, Clinician-Researcher Grants); a Family Network with moderated support groups and a Family Network Ambassador peer program; financial assistance products (Patient Assistance Grants, Disaster Relief and Recovery Fund, Caregiver Connect Grants); a clinical trials and treatment pipeline resource; the biennial DSF Family & Professional Conference; regional Day of Dravet workshops; a Find a Doctor directory and Comprehensive Care Centers network; and legislative advocacy programming. Technology stack is non-proprietary and operational — WordPress/WooCommerce e-commerce, PayPal/Stripe/Square payment processing, Rallybound peer-to-peer fundraising, Etapestry CRM, QuickBooks accounting, and Greater Giving event management — none of which constitute differentiated IP.

Revenue is generated entirely through individual donations, community-led fundraising events (77% of 2025 contributions, including Steps Toward a Cure walks across 9 states, Dance for Dravet galas, and DIY fundraisers), and unrestricted educational grants from pharmaceutical partners (Biocodex, Jazz Pharmaceuticals, UCB, Eisai). All services are provided free to families, the foundation claims 85 cents of every dollar goes to programs, and primary segments are patient families/caregivers, healthcare providers, researchers/industry, and donors/supporters.

Dravet Syndrome Foundation firmographics

Firmographics

Name: Dravet Syndrome Foundation
Legal name: Dravet Syndrome Foundation, Inc.
Website: https://dravetfoundation.org
Company type: Private
Founded year: 2009
Operating status: Operating
Headcount range: 11–50 employees
Short description: Dravet Syndrome Foundation is a 501(c)(3) nonprofit that funds Dravet syndrome research and provides free family support, education, and advocacy services to U.S. patients, caregivers, and clinicians through a community-led platform.
Ownership category
akta.pro rank

Dravet Syndrome Foundation industry classification

Industry

Product category: Rare Disease Patient Advocacy and Research Funding
NAICS: Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Individual and Family Services (6241), Other Individual and Family Services (624190)
SIC: Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090), 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), Research & Science Grantmaking Foundations (BPAGAKAI), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

Rare disease research funding
Patient advocacy services
Family support programs
Epilepsy research grants
Nonprofit healthcare services

Where Dravet Syndrome Foundation is headquartered

Location

Headquarters

HQ city: Cherry Hill
HQ country: United States
HQ region: North America

Offices1 record

Markets served

Dravet Syndrome Foundation business model

Business model

GTM type: B2C
Offering type: Services
Cost components: Personnel, Operations, Marketing or Sales, Others

Revenue model

Individual Donations: Individual donors contribute to DSF through one-time and recurring donations via the website and direct mail campaigns.
Community-Led Fundraising Events: In 2025, 77% of contributions came from benefit events and community-led fundraisers including Steps Toward a Cure walks, Dance for Dravet galas, and virtual fundraisers.
Educational Grants from Pharmaceutical Partners: Pharmaceutical companies provide educational grants to support the foundation's educational programming and website content. Partners include Biocodex, Jazz Pharmaceuticals, UCB, and Eisai.

Go-to-market motion1 record

Distribution channels5 records

Marketing channels14 records

Dravet Syndrome Foundation product offering

Product offering

Core offering

Dravet Syndrome Foundation funds Dravet syndrome research through multi-track grant programs and channels over $3.25 million annually into the field, while providing free family support services — including patient assistance grants, moderated peer support, educational conferences and workshops, and healthcare provider directories — to families and caregivers affected by this rare genetic epilepsy. The foundation also convenes biennial research roundtables and advocates for rare disease policy, operating a website-based platform that links patients, researchers, clinicians, and donors.

Product overview

Dravet Syndrome Foundation (DSF) is a nonprofit organization operating primarily through a website platform that provides a comprehensive ecosystem of programs and services for the Dravet syndrome community. The core offering consists of a website-based platform connecting families, researchers, and healthcare providers through multiple integrated services: the DSF Family Network with its Ambassador Program for peer support; Patient Assistance and Caregiver Connect financial grants; virtual meetup series (Chat & Connect, Grandparent Meetups, Caregivers of Adults); the DSF Biennial Conference and Day of Dravet regional workshops; Find a Doctor and Comprehensive Care Centers directories; Research Grant Programs and Clinical Trials Pipeline; advocacy and legislative programs; and community fundraising events including Steps Toward a Cure walks and Purple Drives Progress awareness campaigns. The organization also operates a shop for merchandise sales.

Differentiator

Problem solved

Functional benefit

Products and services

DSF Research Grant Programs Multi-track research funding for academic and clinical investigators, including Transformational Science Grants, Research Grants, Clinical Research Grants, Postdoctoral Fellowships, and Clinician-Researcher Grants supporting basic, translational, and clinical Dravet syndrome research.
Patient Assistance Grants

Quantifiable outcome

$14.1M+ invested in research since 2009
+4 more outcomes

Companies that use Dravet Syndrome Foundation

Customer profile

Segments4 records

Ideal customer profiles4 records

Dravet Syndrome Foundation technology and API

Technology

Technology focussed No

API detail

Has API: No
API docs
API detail

Core technology

AI maturity

App detail

Integration8 records

Dravet Syndrome Foundation partnerships and signals

Strategic signal

Partnerships

Nine partnerships are on record, tiered core and minor.

Stoke TherapeuticscoreStrategic or Co-development Partner · 1 January 2026Families joined DSF and Stoke Therapeutics on Capitol Hill to advocate for increased access to genetic testing and in honor of Dravet Syndrome Awareness Month. Stoke Therapeutics is developing TANGO-based antisense oligonucleotide therapies for Dravet syndrome.
BiocodexcoreOthersBiocodex provides educational grants to support DSF's mission and programming. The foundation's website acknowledges Biocodex as an educational grant supporter.
Jazz PharmaceuticalscoreOthersJazz Pharmaceuticals provides educational grants to support DSF's educational programming and resources. The company has also partnered with DSF for Capitol Hill advocacy visits.
UCBcoreOthersUCB provides educational grants supporting DSF's mission and educational content. UCB develops treatments for neurological conditions including epilepsy.
EisaicoreOthersEisai provides educational grants to support DSF programming. Eisai is a pharmaceutical company focused on oncology and neurology.
EveryLife Foundation for Rare DiseasescoreStrategic or Co-development PartnerDSF collaborates with EveryLife Foundation on legislative advocacy initiatives including Rare Disease Week and Rare Across America programs. These initiatives empower families to advocate for rare disease policies.
Third Degree Glass FactoryminorGTM or Marketing PartnerThe Third Degree Glass Factory in St. Louis, MO hosts the annual Dance for Dravet fundraising event, one of DSF's most successful grassroots fundraising initiatives.
Epilepsy FoundationminorStrategic or Co-development PartnerDSF recommends families follow the Epilepsy Foundation for advocacy updates, as their policy priorities often align with needs of the Dravet community.
Dr. Elaine WirrellcoreStrategic or Co-development PartnerIn 2022, DSF worked with Dr. Elaine Wirrell to support an international consensus on the diagnosis and management of Dravet syndrome, bringing together physicians and caregivers to develop a care guide.

Scale indicators16 records

Recent moves6 records

Expansion highlights5 records

Dravet Syndrome Foundation competitors and assessment

Company assessment

Broad incumbents

Epilepsy Foundation: Largest US epilepsy-focused nonprofit offering advocacy, education, and research support. Already a DSF partner on advocacy; broader scope and significantly larger scale than DSF's disease-specific remit.

Direct peers

Dravet Syndrome Alliance: UK-based international counterpart dedicated to Dravet syndrome families, research funding, and advocacy. Most directly comparable organization by disease focus and mission, differing primarily by geographic remit.
CURE Epilepsy: US nonprofit funding epilepsy research with a similar patient-focused model of grants, research initiatives, and family engagement. Comparable in research-funding focus but with broader epilepsy scope.
Tuberous Sclerosis Alliance: Disease-specific nonprofit for a rare genetic disorder combining research funding, family support, comprehensive care centers, and advocacy. Closely comparable operating model to DSF but for tuberous sclerosis complex.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key highlights7 records

Customer concentration

Dravet Syndrome Foundation financial estimates

Financial estimate

Revenue estimate

Valuation estimate

Dravet Syndrome Foundation leadership team

Management profile

Number of profiles

Profiles5 records

Dravet Syndrome Foundation funding detail

Funding detail

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

Dravet Syndrome Foundation M&A and investment

M&A and investment

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Dravet Syndrome Foundation

What does Dravet Syndrome Foundation do?

Is Dravet Syndrome Foundation a public or private company?

Dravet Syndrome Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.

When was Dravet Syndrome Foundation founded?

Dravet Syndrome Foundation was founded in 2009. It employs 11 to 50 people.

Where is Dravet Syndrome Foundation based?

Dravet Syndrome Foundation is headquartered in Cherry Hill, United States, in the North America region.

How does Dravet Syndrome Foundation make money?

Three revenue lines are on record. Individual Donations are the primary driver. The others are community-Led Fundraising Events and educational Grants from Pharmaceutical Partners.

Who are Dravet Syndrome Foundation's main competitors?

Epilepsy Foundation is listed as a broad incumbent. Direct peers are Dravet Syndrome Alliance, CURE Epilepsy and Tuberous Sclerosis Alliance.

Does Dravet Syndrome Foundation have an API?

No public API is recorded for Dravet Syndrome Foundation.

What industry is Dravet Syndrome Foundation in?

Dravet Syndrome Foundation's product category is Rare Disease Patient Advocacy and Research Funding. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 813212 and its SIC code is 8300.