cdkl5 research collaborative
CDKL5 Research Collaborative is a 501(c)(3) non-profit founded in 2017 that funds clinical research, operates a disease registry and Centers of Excellence network, and supports families affected by CDKL5 Deficiency Disorder, a rare genetic epilepsy.
- Company typePrivate
- Founded2017
- HeadquartersDexter, United States
- Headcount—
- GTM typeB2C
- OfferingServices
What cdkl5 research collaborative does
CDKL5 Research Collaborative is a 501(c)(3) non-profit organization founded in 2017 and headquartered in Dexter, Michigan, dedicated to advancing clinical research and patient advocacy for CDKL5 Deficiency Disorder, an ultra-rare genetic epilepsy. The organization operates as an all-volunteer entity with no paid staff, channeling donor contributions into research grants, clinical infrastructure, and family-support resources for an internationally distributed population of affected families.
The Collaborative runs six core programs: the Kiera's Hope Project (a sub-brand supporting affected families), a Clinical Research Funding Program that distributes grants to investigators, the CDKL5 Database and Registry developed in partnership with the UPenn Orphan Disease Center, a Clinical Trial Information Service, the CDKL5 Centers of Excellence Network spanning multiple pediatric hospitals, and a Therapies Resource Hub. A Scientific Advisory Board drawn from UCSD, Harvard, UT Southwestern, UPenn, and Anavex provides research governance and credibility.
Its business model is donation-funded rather than revenue-generating. Funding is sourced from individual donors, fundraising events, and selective pharmaceutical sponsorships — including Marinus Pharmaceuticals for the Marigold Study. The organization has earned the Candid Platinum Seal of Transparency annually from 2018 through 2025, signaling sustained governance and disclosure quality. As a non-profit patient advocacy organization, it has no commercial product, no pricing model, and no AI or technology stack; its competitive position rests on community coordination, scientific advisory talent, and institutional partnerships.
cdkl5 research collaborative firmographics
Firmographics- Name
- cdkl5 research collaborative
- Legal name
- CDKL5 Research Collaborative
- Website
- https://cdkl5research.org
- Company type
- Private
- Founded year
- 2017
- Operating status
- Operating
- Short description
- CDKL5 Research Collaborative is a 501(c)(3) non-profit founded in 2017 that funds clinical research, operates a disease registry and Centers of Excellence network, and supports families affected by CDKL5 Deficiency Disorder, a rare genetic epilepsy.
- Ownership category
- akta.pro rank
cdkl5 research collaborative industry classification
Industry- Product category
- Rare Disease Patient Advocacy & Family Support
- NAICS
- Other Individual and Family Services (62419), Individual and Family Services (6241), Scientific Research and Development Services (5417)
- SIC
- Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)
- akta.pro primary industry
- Clinical Data Repositories (CDR) & Longitudinal Patient Records (HLACAIAH)
Keywords
Where cdkl5 research collaborative is headquartered
LocationHeadquarters
- HQ city
- Dexter
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
cdkl5 research collaborative business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Donations: Tax-deductible donations from individuals, families, and supporters. Organization is a 501(c)(3) non-profit with EIN# 82-2453342. Maximum donation impact due to all-volunteer staff and minimal overhead.
- Fundraising Events: Community fundraising events organized by volunteers to generate donations and awareness for the CDKL5 community.
Go-to-market motion2 records
Distribution channels3 records
Marketing channels7 records
cdkl5 research collaborative product offering
Product offeringCore offering
CDKL5 Research Collaborative is an all-volunteer 501(c)(3) non-profit that funds innovative clinical research on CDKL5 Deficiency Disorder, maintains a patient registry and database with the University of Pennsylvania Orphan Disease Center, curates information on clinical trials, curates a directory of CDKL5 Centers of Excellence at leading pediatric hospitals, and provides families with educational resources, therapy information, and a sub-brand called Kiera's Hope Project focused on arts enrichment and quality-of-life interventions.
Product overview
CDKL5 Research Collaborative is a non-profit organization (501(c)(3)) founded in 2017, operating as a single focused initiative rather than a platform-plus-modules architecture. The organization provides a comprehensive web platform for CDKL5 Deficiency Disorder research funding, family support, and education. Key offerings include the Kiera's Hope Project sub-brand focused on inspirational support and arts enrichment, a Clinical Research Funding Program offering grants for epilepsy and neuroplasticity research, a CDKL5 Database and Registry in partnership with UPenn, clinical trial information services (including the Marigold Study), a network of CDKL5 Centers of Excellence, and a Therapies Resource Hub. The organization is led by families directly impacted by CDKL5 disorder and focuses on clinical care and advocacy for this rare X-linked genetic condition affecting approximately several thousand cases worldwide.
Differentiator
Problem solved
Functional benefit
Brands
- Kiera's Hope Project: A project dedicated to spreading hope and possibility, honoring the founder's daughter Kiera who inspired everything the organization does. Focuses on clinical research in communication, epilepsy, neuroplasticity, and arts enrichment for CDKL5 patients.
Products and services
- Kiera's Hope Project Sub-initiative of CDKL5 Research Collaborative dedicated to spreading hope, honoring founder Katheryn's daughter Kiera, pursuing research in communication, epilepsy, and neuroplasticity, and enriching the lives of children with CDKL5 through arts and humanities programs.
- Clinical Research Funding Program Grant and funding program supporting innovative clinical research for CDKL5 Deficiency Disorder, including center-based, community, and educational settings, with emphasis on epilepsy, neuroplasticity, and neuro-abilitation. Awards grants through annual Requests for Proposals (e.g., 2026 RFP posted in 2025).
- CDKL5 Deficiency Disorder Database and Registry Patient registry and database collecting data, clinical information, and demographics of those affected by CDKL5 Disorder, operated in partnership with the University of Pennsylvania Orphan Disease Center to understand natural history and direct research efforts.
- Clinical Trial Information Service Resource providing information about ongoing CDKL5 clinical trials, including the Marigold Study (pivotal global clinical trial of Ganaxolone by Marinus Pharmaceuticals for treatment of epilepsy in CDKL5 Deficiency Disorder).
- CDKL5 Centers of Excellence Network Directory of designated multidisciplinary CDKL5 Centers of Excellence at leading US pediatric hospitals, including Children's Hospital Colorado, Boston Children's Hospital, Cleveland Clinic, St. Louis Children's Hospital, UCLA, NYU Langone, CHOP, and Texas Children's Hospital.
- Therapies Resource Hub Resource center providing information about various therapies for CDKL5 patients, including Physical Therapy, Speech Therapy, Occupational Therapy, Vision Therapy, Music Therapy, Sensory Therapy, Hippotherapy, Aqua Therapy, and Massage Therapy.
- CDKL5 Research Collaborative Website Primary public web platform providing information about CDKL5 Deficiency Disorder, research funding opportunities, family resources, clinical trial information, CDKL5 Centers of Excellence listings, and donation collection for the non-profit.
Companies that use cdkl5 research collaborative
Customer profileNamed customers2 records
Segments3 records
Ideal customer profiles2 records
cdkl5 research collaborative technology and API
TechnologyAPI detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
cdkl5 research collaborative partnerships and signals
Strategic signalPartnerships
Ten partnerships are on record, tiered core and minor.
- CDKL5 AlliancecoreCDKL5 Research Collaborative is a member of the global CDKL5 Alliance, collaborating with international CDKL5 organizations to advance research and support for families worldwide.
- Global GenescoreMember of Global Genes, a leading rare disease patient advocacy organization, providing connection to broader rare disease community resources and advocacy efforts.
- University of Pennsylvania Orphan Disease CentercorePartnership for CDKL5 Deficiency Disorder Database and Registry - collection of data, clinical information and demographics of those affected by CDKL5 Disorder to understand natural history and direct research efforts.
- Marinus PharmaceuticalscorePartnership for the Marigold Study - pivotal global clinical trial of Ganaxalone, a novel neurosteroid, for treatment of epilepsy in CDKL5 Deficiency Disorder.
- Children's Hospital ColoradocoreFirst CDKL5 Center of Excellence established in 2014 within the Rett Clinic, under direction of Tim Benke MD. Multidisciplinary clinic for evaluation and treatment of CDKL5 patients.
- Boston Children's HospitalcoreCDKL5 Center of Excellence under leadership of Heather Olson MD. Multidisciplinary clinic seeing patients from across the US and internationally, actively participating in CDKL5 research.
- Cleveland CliniccoreCDKL5 Center of Excellence headed by Elia Pestana Knight MD. 'Clinic without walls' offering multidisciplinary evaluation and treatment for CDKL5.
- St. Louis Children's Hospital / Washington UniversitycoreHome to Rett Spectrum Clinic where Judith Weisenberg MD and Robin Ryther MD/PHD evaluate and treat children with CDKL5 deficiency, with large augmentative communication team.
- Euro-Peds FoundationminorFoundation raises funds and awards grants to help children with special needs access life-changing intensive pediatric physical therapy treatment at Euro-Peds.
- CDKL5 Organizations WorldwidecoreConnected to global network of CDKL5 organizations including CDKL5 Alliance Francophone, CDKL5 UK, CDKL5 Canada, CDKL5 Japan, CDKL5 Germany, International Foundation for CDKL5 Research, and others.
Scale indicators3 records
Recent moves7 records
Expansion highlights5 records
cdkl5 research collaborative competitors and assessment
Company assessmentBroad incumbents
- Global Genes: Leading rare-disease patient advocacy organization of which CRC is a member. Provides cross-disorder convening, advocacy tooling, and rare-disease awareness programming analogous to CRC's community-led model.
- National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy organization in the US; CRC engages the broader rare-disease policy and funding ecosystem through this network. Comparable mission framing around patient advocacy and orphan-drug development.
- International Rett Syndrome Foundation: Larger, more established Rett syndrome advocacy and research organization. Operates a broader portfolio of programs across research, family support, and clinics, analogous to where CRC could scale within CDKL5.
- EveryLife Foundation for Rare Diseases: Policy-focused rare-disease advocacy organization advancing newborn screening, orphan-drug legislation, and FDA engagement. Comparable advocacy function in the same orphan-drug ecosystem CRC operates in.
Emerging players
- Rett Syndrome Research Trust: Highly active patient-driven research foundation focused on Rett syndrome, a closely related neurodevelopmental disorder with overlapping gene pathway (MECP2/CDKL5 axis). Comparable model — affected-families-led, venture philanthropy-style research funding, deep pharma relationships — and overlapping clinical and scientific talent.
Direct peers
- Loulou Foundation: Private foundation dedicated to CDKL5 Deficiency Disorder, funding gene therapy and translational research at significant scale. Direct competitor for donor mindshare, scientific talent, and pharma partnerships in CDKL5.
- International Foundation for CDKL5 Research (IFCR): Predecessor organization co-founded by CRC's founder; the other leading CDKL5-focused research and advocacy foundation in the US. Directly comparable mission, donor base overlap, and scientific advisory talent pool.
- CDKL5 Alliance: Umbrella alliance of CDKL5 patient organizations worldwide of which CRC is a member. Coordinates cross-country advocacy and shares the same patient/family constituency.
Regional players
- CDKL5 UK: UK-based CDKL5 patient advocacy organization affiliated with the CDKL5 Alliance. Operates the same mission and family-support model in the UK/European geography, with overlapping scientific advisory and pharma relationships.
Others
- Orphan Disease Center (University of Pennsylvania): Academic partner hosting the CDKL5 Database and Registry. Functions as enabling infrastructure for CRC's registry and natural-history research program rather than a direct competitor.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights7 records
Customer concentration
cdkl5 research collaborative social profiles
Digital presencecdkl5 research collaborative compliance and trust
Trust signalCompliance2 records
cdkl5 research collaborative financial estimates
Financial estimateRevenue estimate
Valuation estimate
cdkl5 research collaborative leadership team
Management profileNumber of profiles
Profiles12 records
cdkl5 research collaborative funding detail
Funding detailFunding overview
Funding rounds
Investors
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cdkl5 research collaborative M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about cdkl5 research collaborative
What does cdkl5 research collaborative do?
CDKL5 Research Collaborative is an all-volunteer 501(c)(3) non-profit that funds innovative clinical research on CDKL5 Deficiency Disorder, maintains a patient registry and database with the University of Pennsylvania Orphan Disease Center, curates information on clinical trials, curates a directory of CDKL5 Centers of Excellence at leading pediatric hospitals, and provides families with educational resources, therapy information, and a sub-brand called Kiera's Hope Project focused on arts enrichment and quality-of-life interventions.
Is cdkl5 research collaborative a public or private company?
cdkl5 research collaborative is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was cdkl5 research collaborative founded?
cdkl5 research collaborative was founded in 2017.
Where is cdkl5 research collaborative based?
cdkl5 research collaborative is headquartered in Dexter, United States, in the North America region.
How does cdkl5 research collaborative make money?
Two revenue lines are on record. Donations are the primary driver. The others are fundraising Events.
Who are cdkl5 research collaborative's main competitors?
Broad incumbents on record are Global Genes, National Organization for Rare Disorders (NORD), International Rett Syndrome Foundation and EveryLife Foundation for Rare Diseases. Rett Syndrome Research Trust is listed as an emerging player. Direct peers are Loulou Foundation, International Foundation for CDKL5 Research (IFCR) and CDKL5 Alliance. CDKL5 UK is listed as a regional player. Orphan Disease Center (University of Pennsylvania) is listed as an others.
Does cdkl5 research collaborative have an API?
No public API is recorded for cdkl5 research collaborative.
What industry is cdkl5 research collaborative in?
cdkl5 research collaborative's product category is Rare Disease Patient Advocacy & Family Support. Its primary akta.pro industry code is HLACAIAH, Clinical Data Repositories (CDR) & Longitudinal Patient Records. Its NAICS code is 62419 and its SIC code is 8090.