Down Syndrome Diagnosis Network
Down Syndrome Diagnosis Network (DSDN) is a US 501(c)(3) nonprofit that supports new and expectant parents of children with Down syndrome through a custom mobile app, moderated online groups, one-to-one mentorship, annual retreats, and medical professional outreach, serving 25,000+ families globally.
- Company typePrivate
- Founded2014
- HeadquartersStillwater, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Down Syndrome Diagnosis Network does
Down Syndrome Diagnosis Network (DSDN) is a US-based 501(c)(3) nonprofit founded on World Down Syndrome Day (March 21, 2014) and headquartered in Stillwater, Minnesota, that supports new and expectant parents receiving a Down syndrome diagnosis. The organization operates with a lean structure of two paid staff (Executive Director Melissa Shutwell and Family Support Director Shannon Prausa) supported by 100+ volunteers and a board drawn from Fortune 500 operators, and serves a community of more than 25,000 families globally, with approximately 1,500 new parents joining its online groups each year and a stated reach of over 20% of US families welcoming a child with Down syndrome annually.
The core product surface is the custom-built DSDN Mobile App (hosted and maintained by Goji Labs), which provides 24/7 moderated private groups organized by birth year, pregnancy status, medical condition, and cultural identity, including dedicated cohorts for fathers, Spanish-speaking families, and Black and Mixed families. Adjacent programs include one-to-one mentorship through a partnership with Eunie's Buddies (Best Buddies International), annual Rockin' Mom and Rockin' Dad retreats ($400/attendee), a webinar series, the From Diagnosis Forward podcast on Buzzsprout, an online resource library, the Rockin' Family Fund (scholarships, adoption grants, and care packages), and a medical professional outreach program that attended 39 conferences across 21 states. DSDN is recognized by the American Academy of Pediatrics as a preferred resource for diagnosis-stage referrals.
Revenue is generated entirely through donations, retreat registration fees, merchandise sales via Bonfire and Printful, and peer-to-peer fundraising campaigns processed through Network for Good, with no fees charged to families for core services. The organization distributes donations via one-time gifts, the Circle of Friends monthly program, donor-advised funds, IRA qualified charitable distributions, cryptocurrency, and workplace giving. Strategic technology dependencies include Network for Good, Constant Contact, Google Analytics, Jotform, Goji Labs (app hosting), and PayPal/Square for payments; no AI/ML capabilities are deployed in the current product stack.
Down Syndrome Diagnosis Network firmographics
Firmographics- Name
- Down Syndrome Diagnosis Network
- Legal name
- Down Syndrome Diagnosis Network
- Website
- https://dsdiagnosisnetwork.org
- Company type
- Private
- Founded year
- 2014
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Down Syndrome Diagnosis Network (DSDN) is a US 501(c)(3) nonprofit that supports new and expectant parents of children with Down syndrome through a custom mobile app, moderated online groups, one-to-one mentorship, annual retreats, and medical professional outreach, serving 25,000+ families globally.
- Ownership category
- akta.pro rank
Down Syndrome Diagnosis Network industry classification
Industry- Product category
- Disability Family Support Services
- NAICS
- Other Individual and Family Services (624190), Services for the Elderly and Persons with Disabilities (624120)
- SIC
- Services-Social Services (8300)
- akta.pro primary industry
- Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM)
- akta.pro secondary industries
- Disability Services & Independent Living Support (BPAGACAG), Parent Support Groups & Peer Networks (EDACALAG)
Keywords
Where Down Syndrome Diagnosis Network is headquartered
LocationHeadquarters
- HQ city
- Stillwater
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Down Syndrome Diagnosis Network business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Others
Revenue model
- Donations and Charitable Contributions: Tax-deductible donations through various giving options including one-time gifts, monthly Circle of Friends program, donor advised funds, IRA qualified charitable distributions, cryptocurrency, and workplace giving programs. EIN: 46-3042112.
- Retreat Registration Fees: Revenue from Rockin' Mom and Rockin' Dad Retreat registrations. Rockin' Mom Retreat registration costs $400 per attendee.
- Merchandise Sales: Sales of DSDN merchandise including apparel, mugs, whiskey glasses, specialty items, and gifts through Bonfire store and Printful-based Rockin' Goodies shop.
- Peer-to-Peer Fundraising: Community members create personal fundraising campaigns through Network for Good platform, with prizes offered for retreat attendance and staycations.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Free | Free community access |
| One time/ perpetual license | One-time | Rockin' Mom Retreat 2026 |
| One time/ perpetual license | One-time | Rockin' Dad Retreat 2026 |
Go-to-market motion2 records
Distribution channels7 records
Marketing channels9 records
Down Syndrome Diagnosis Network product offering
Product offeringCore offering
Down Syndrome Diagnosis Network (DSDN) operates a community support ecosystem for new and expectant parents of children with Down syndrome, anchored by a custom-built mobile app providing 24/7 access to private, moderated peer support groups. The organization also offers one-to-one mentorship through its Eunie's Buddies partnership, annual in-person Rockin' Mom and Rockin' Dad Retreats, an online resource library, a parent webinar series, a community podcast, local organization connections, and financial assistance through the Rockin' Family Fund.
Product overview
DSDN operates as a community support organization offering a suite of interconnected programs centered around its custom-built DSDN App as the primary digital platform. The core offering includes private, moderated online support groups (pregnancy support, birth clubs, dad groups, and 50+ topical groups), a one-to-one parent mentorship program through partnership with Eunie's Buddies, local organization connections, an online resource library, a parent webinar series, and the From Diagnosis Forward podcast. DSDN also operates in-person programming including Rockin' Mom and Dad Retreats, and provides financial support through the Rockin' Family Fund (scholarships, adoption grants, welcome gifts, care packages). Medical professional resources and merchandise stores round out the ecosystem. The organization reaches approximately 25,000+ families globally with nearly 1,500 new parents joining annually.
Differentiator
Problem solved
Functional benefit
Brands
- DSDN App (Rockin' Parents App): A free online community for parents of children with Down syndrome offering 24/7 support, private groups, pregnancy support, birth groups, dad support, parent identity groups, and medical condition groups.
- Rockin' Mom Retreat
- Rockin' Dad Retreat
- Eunie's Buddies Partnership
Products and services
- DSDN Mobile App A free, ad-free, moderated mobile community app for parents of children with Down syndrome, providing 24/7 peer connection through private support groups organized by pregnancy status, birth year, cultural background, and medical condition. Custom-built and owned by DSDN; hosted and maintained by Goji Labs and available on Google Play Store.
- Online Support Groups Private, moderated online communities including pregnancy support groups, birth clubs organized by child's birth year, dad support groups, and 50+ topical groups for medical conditions, cultural identities, and shared experiences. Free for parents of children with Down syndrome.
- Parent Mentorship Program (Eunie's Buddies Partnership) One-to-one parent mentorship connecting expectant and new families with trained mentors who have lived experience raising a child with Down syndrome, offered through partnership with Eunie's Buddies, a program of Best Buddies International. Free for participating families.
- Rockin' Mom and Dad Retreats Annual in-person weekend retreats for mothers and fathers of children with Down syndrome to connect, recharge, and build community. Rockin' Mom Retreat held at Arizona Grand Resort & Spa at $400 per attendee; Rockin' Dad Retreat held at The Westin Minneapolis at $129/night discounted hotel rate. Includes meals, programming, activities, and curated take-home items.
- Parent Webinar Series Free educational webinar series covering pregnancy with a Down syndrome diagnosis, AAP health guidelines, early intervention, IEPs, speech therapy, genetic counseling, and advocacy, with recordings available on demand via YouTube.
- From Diagnosis Forward Podcast Community-voiced podcast hosted on Buzzsprout featuring real stories from parents sharing the experience of receiving an unexpected Down syndrome diagnosis and raising a child with Down syndrome. Free to stream.
- Medical Professional Resources Physician toolkits, educational resources, diagnosis delivery guidance, referral options, and training for healthcare providers to improve the Down syndrome diagnosis experience. Distributed at medical conferences and recognized by the American Academy of Pediatrics.
- Rockin' Family Fund Financial support program providing scholarships for conferences, adoption grants, welcome gifts for new parents, care packages for families with children in NICU or post-surgery, and memorial gifts for bereaved families.
- DSDN Merchandise Store Online merchandise shops featuring Rockin' Moms, Dads, siblings, and grandparents apparel through Bonfire, and Rockin' Goodies through Printful with mugs, glasses, and specialty gifts. Proceeds support DSDN's programs.
Quantifiable outcome
- Over 20% of US families welcoming children with Down syndrome reached annually
- +3 more outcomes
Companies that use Down Syndrome Diagnosis Network
Customer profileNamed customers2 records
Segments6 records
Ideal customer profiles6 records
Down Syndrome Diagnosis Network technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration8 records
Feature1 record
Down Syndrome Diagnosis Network partnerships and signals
Strategic signalPartnerships
16 partnerships are on record, tiered core and minor.
- Eunie's Buddies (Best Buddies International)coreDSDN partners with Eunie's Buddies, a program of Best Buddies International, to offer one-to-one parent mentorship for expectant and new families. This program creates thoughtful, supportive connections rooted in shared experience, compassion, and trust, expanding support from diagnosis through various stages of parenting by connecting parents with trained mentors nationwide.
- American Academy of Pediatrics (AAP)coreDSDN works with AAP to ensure families receive up-to-date, accurate, well-informed, and balanced diagnosis experiences. DSDN distributes AAP health supervision guidelines and references 2022 AAP guidelines in its medical outreach materials.
- DSMIG (Down Syndrome Medical Interest Group)coreDSDN has worked with DSMIG for 8 years regarding the parental experience of a Down syndrome diagnosis.
- ACOG (American College of Obstetricians and Gynecologists)coreDSDN Medical Outreach Team has participated in ACOG conferences to improve diagnosis experiences and connect with healthcare providers.
- ACMG (American College of Medical Genetics)coreDSDN has worked with ACMG regarding the parental experience of a Down syndrome diagnosis.
- NANN (National Association of Neonatal Nurses)coreDSDN has collaborated with NANN regarding the parental experience of a Down syndrome diagnosis.
- TalkToolsminorTalkTools sponsors DSDN Day 2026. TalkTools empowers therapists, educators, and families with innovative tools, training, and techniques to improve speech clarity and feeding skills.
- Bunch BikesminorBunch Bikes sponsors DSDN Day 2026. They make inclusive front-loading electric cargo bikes for families, including those with special needs, with customized adaptive seating at no cost.
- National Down Syndrome Society (NDSS)coreNDSS sponsors DSDN Day 2026. Founded in 1979, NDSS empowers individuals with Down syndrome and their families through advocacy, resources, and community engagement.
- Down Syndrome Collaborative (DSC)coreA collaborative effort to best serve new and expectant parents from pregnancy through age 3 with key partners in the Down syndrome community. Welcomes local organizations to join bi-monthly meetings focused on best practice sharing.
- Goji LabscoreDSDN partners with Goji Labs to host and maintain the DSDN mobile app.
- Network for GoodcoreDSDN uses Network for Good platform for peer-to-peer fundraising campaigns and donations processing.
- Constant ContactcoreDSDN uses Constant Contact for email marketing and newsletter distribution.
- Google AnalyticscoreDSDN uses Google Analytics for web traffic analysis and demographic reporting.
- Global Down Syndrome FoundationminorReferenced as a national organization for local Down syndrome organization finder tool.
- National Down Syndrome Congress (NDSC)minorReferenced as a national organization for local Down syndrome organization finder tool.
Scale indicators7 records
Recent moves7 records
Expansion highlights6 records
Down Syndrome Diagnosis Network competitors and assessment
Company assessmentDirect peers
- National Down Syndrome Congress (NDSC): NDSC is the second major national Down syndrome organization running conferences, educational resources, and advocacy programs. It overlaps with DSDN's family-support and medical-professional referral missions and is listed as a channel partner for DSDN's local-organization finder.
- National Down Syndrome Society (NDSS): Founded in 1979, NDSS is the larger national Down syndrome organization focused on advocacy, resources, and community engagement. Compares directly to DSDN as it serves overlapping families and policy/awareness missions, though DSDN is uniquely focused on the diagnosis moment while NDSS is broader across the lifespan.
- Global Down Syndrome Foundation: Global Down Syndrome Foundation funds Down syndrome research, medical care, and advocacy. It overlaps with DSDN's national reach and is referenced as a resource partner via DSDN's local organization finder tool.
Emerging players
- Parent to Parent USA: Parent to Parent USA matches parents of children with disabilities to trained support parents — a direct analog to DSDN's Eunie's Buddies mentorship program, but across the full IDD spectrum. Comparable as a peer-support infrastructure model for special-needs families.
- Best Buddies International: Best Buddies operates Eunie's Buddies, the 1:1 parent mentorship program that DSDN directly partners with. While broader than Down syndrome (it serves IDD broadly), it shares the peer-connection mission and infrastructure that DSDN leverages for its mentorship offering.
Broad incumbents
- March of Dimes: March of Dimes addresses maternal and infant health, including pregnancies diagnosed with Down syndrome. It is a broad-incumbent nonprofit in adjacent maternal-health territory and represents both an overlap in mission and a competing funder.
- Family Voices: Family Voices is a national family-led organization supporting children with special healthcare needs and disabilities. It operates at a broader disability scope than DSDN but addresses overlapping needs around diagnosis navigation and family support.
Regional players
- North Carolina Down Syndrome Alliance: NCDSA is a regional Down syndrome organization referenced in DSDN's leadership team background (Mahala Turner led family engagement initiatives there). It overlaps with DSDN's local-connections mission but serves primarily North Carolina families.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks6 records
Key highlights7 records
Customer concentration
Down Syndrome Diagnosis Network social profiles
Digital presenceDown Syndrome Diagnosis Network financial estimates
Financial estimateRevenue estimate
Valuation estimate
Down Syndrome Diagnosis Network leadership team
Management profileNumber of profiles
Profiles10 records
Down Syndrome Diagnosis Network funding detail
Funding detailFunding overview
Funding rounds1 record
Investors1 record
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Down Syndrome Diagnosis Network M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about Down Syndrome Diagnosis Network
What does Down Syndrome Diagnosis Network do?
Down Syndrome Diagnosis Network (DSDN) operates a community support ecosystem for new and expectant parents of children with Down syndrome, anchored by a custom-built mobile app providing 24/7 access to private, moderated peer support groups. The organization also offers one-to-one mentorship through its Eunie's Buddies partnership, annual in-person Rockin' Mom and Rockin' Dad Retreats, an online resource library, a parent webinar series, a community podcast, local organization connections, and financial assistance through the Rockin' Family Fund.
Is Down Syndrome Diagnosis Network a public or private company?
Down Syndrome Diagnosis Network is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Down Syndrome Diagnosis Network founded?
Down Syndrome Diagnosis Network was founded in 2014. It employs 1 to 10 people.
Where is Down Syndrome Diagnosis Network based?
Down Syndrome Diagnosis Network is headquartered in Stillwater, United States, in the North America region.
How does Down Syndrome Diagnosis Network make money?
Four revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are retreat Registration Fees, merchandise Sales and peer-to-Peer Fundraising.
Who are Down Syndrome Diagnosis Network's main competitors?
Direct peers on record are National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS) and Global Down Syndrome Foundation. Emerging players are Parent to Parent USA and Best Buddies International. Broad incumbents are March of Dimes and Family Voices. North Carolina Down Syndrome Alliance is listed as a regional player.
Does Down Syndrome Diagnosis Network have an API?
No public API is recorded for Down Syndrome Diagnosis Network.
What industry is Down Syndrome Diagnosis Network in?
Down Syndrome Diagnosis Network's product category is Disability Family Support Services. Its primary akta.pro industry code is BPAGALAM, Disability Services & Assistive Solutions (Accessibility, Assistive Tech), with a secondary code of BPAGACAG, Disability Services & Independent Living Support. Its NAICS code is 624190 and its SIC code is 8300.