Dravet Syndrome Foundation
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
Where Dravet Syndrome Foundation is headquartered
LocationHeadquarters
- 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 offeringCore 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 profileSegments4 records
Ideal customer profiles4 records
Dravet Syndrome Foundation technology and API
TechnologyTechnology 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 signalPartnerships
Nine partnerships are on record, tiered core and minor.
- Stoke TherapeuticscoreFamilies 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.
- BiocodexcoreBiocodex provides educational grants to support DSF's mission and programming. The foundation's website acknowledges Biocodex as an educational grant supporter.
- Jazz PharmaceuticalscoreJazz Pharmaceuticals provides educational grants to support DSF's educational programming and resources. The company has also partnered with DSF for Capitol Hill advocacy visits.
- UCBcoreUCB provides educational grants supporting DSF's mission and educational content. UCB develops treatments for neurological conditions including epilepsy.
- EisaicoreEisai provides educational grants to support DSF programming. Eisai is a pharmaceutical company focused on oncology and neurology.
- EveryLife Foundation for Rare DiseasescoreDSF 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 FactoryminorThe 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 FoundationminorDSF recommends families follow the Epilepsy Foundation for advocacy updates, as their policy priorities often align with needs of the Dravet community.
- Dr. Elaine WirrellcoreIn 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 assessmentBroad 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 social profiles
Digital presenceDravet Syndrome Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Dravet Syndrome Foundation leadership team
Management profileNumber of profiles
Profiles5 records
Dravet Syndrome Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
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Dravet Syndrome Foundation M&A and investment
M&A and investmentM&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?
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.
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.