What Loulou Foundation does

Loulou Foundation is a private non-profit UK foundation established in 2015 and headquartered in London, with an additional office in Dubai. Its mission is to accelerate the development of therapeutics for CDKL5 Deficiency Disorder (CDD), a rare neurodevelopmental condition. The foundation operates a grant-funded research portfolio that has supported over 100 projects across 60+ laboratories on four continents, enabling more than 200 scientists, and convenes the global CDD field through the annual CDKL5 Forum, which draws approximately 200 attendees.

The foundation's core technical and operational assets center on field coordination and, increasingly, direct therapeutic development. It established the CDKL5 Program of Excellence at the University of Pennsylvania (2016), was instrumental in securing ICD-10 code G40.42 for CDD as a distinct clinical entity (January 2020), and built clinical infrastructure through the International Foundation for CDKL5 Research (IFCR) Clinical Centers of Excellence (November 2021) and a pre-competitive consortium of seven biopharma companies (2021). In April 2025, the foundation joined the Oxford-Harrington Rare Disease Centre Advisory Council. Its wholly-owned subsidiary, Elaaj Bio, leads direct therapeutic development, with a lead gene therapy candidate, ELJ-101, advancing toward clinical trials via a manufacturing partnership with Viralgen announced in May 2026.

The business model is philanthropic: funding flows from private donors and grants, principally from the Jafar family and associated networks, and is deployed into research grants, infrastructure, and subsidiary R&D. There is no commercial product revenue, no licensing income disclosed, and no ticket-based revenue model; the foundation is sustained by donor contributions and, prospectively, by future returns from therapeutic assets developed through Elaaj Bio. Leadership blends translational science and regulatory experience, including senior executives with prior roles at CHDI, UCB, Roche, Aro Biotherapeutics, and the FDA, supported by a board including an IBM Fellow and former Sanofi executives.

Name

Loulou Foundation

Legal name

Loulou Foundation

Website

https://louloufoundation.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

Loulou Foundation is a private UK non-profit founded in 2015 that funds CDKL5 Deficiency Disorder research across 60+ labs and four continents, convenes the annual CDKL5 Forum, and develops therapeutics through wholly-owned subsidiary Elaaj Bio.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Companion Diagnostic (CDx) Co-Development Services (biopharma partnerships, clinical strategy) (HLAAAMAB)

Keywords

• Rare disease research
• CDKL5 disorder therapeutics
• Research grant funding
• Gene therapy programs
• Scientific symposium hosting

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Technology or R&D, Personnel, Operations, Marketing or Sales

Revenue model

1. Foundation Funding: The Loulou Foundation is a private non-profit UK foundation that funds research projects at universities and research organizations. Revenue model consists of philanthropic funding and grants rather than commercial revenue generation.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels5 records

Core offering

Loulou Foundation is a private non-profit UK foundation that funds and coordinates research and therapeutic development for CDKL5 Deficiency Disorder (CDD). It operates a research grant programme supporting over 100 projects across 60+ laboratories on four continents, hosts the annual CDKL5 Forum scientific symposium, and maintains an online collaboration portal for CDD researchers. Through its wholly-owned subsidiary Elaaj Bio, the Foundation also directly advances preclinical-stage gene therapy programs such as ELJ-101 toward clinical development.

Product overview

Loulou Foundation is a private non-profit UK foundation dedicated to advancing research and development of therapeutics for CDKL5 Deficiency Disorder. The Foundation operates a coordinated portfolio consisting of the CDKL5 Pilot Grant Programme, which funds over 100 research projects at more than 60 laboratories across four continents, and the annual CDKL5 Forum symposium. The Foundation also supports an online collaboration portal (cdkl5forum.org) for researchers. Through its wholly-owned biotechnology subsidiary Elaaj Bio, the Foundation is advancing the ELJ-101 gene therapy program toward clinical development. The Foundation's activities span basic research funding, translational development, clinical network support, and direct therapeutic development.

Differentiator

Problem solved

Functional benefit

Products and services

• CDKL5 Pilot Grant Programme Annual competitive research grant programme that funds scientific projects investigating CDKL5 Deficiency Disorder biology, disease mechanisms, and therapeutic development across leading universities and research institutions worldwide. Since 2015, it has supported over 100 separate research projects at more than 60 laboratories on four continents.
• CDKL5 Forum Annual international scientific symposium dedicated to CDKL5 and CDD, bringing together scientists, clinicians, pharmaceutical industry representatives, and regulatory experts. The most recent forum attracted nearly 200 attendees, and the next edition is scheduled for October 27-28, 2025, in Boston, USA, covering basic science, translational and clinical development, and therapeutics updates.
• CDKL5 Forum Online Portal Online portal at www.cdkl5forum.org launched by the Foundation to enable enhanced communication and collaboration among CDKL5 researchers worldwide.
• ELJ-101 Preclinical-stage investigational gene therapy program for CDKL5 Deficiency Disorder developed by subsidiary Elaaj Bio, leveraging recombinant AAV (rAAV) vector technology for the potential treatment of this rare pediatric neurological condition. The program is being advanced toward clinical development in partnership with CDMO Viralgen, with the first clinical trial targeted for early 2027.

Quantifiable outcome

• Over 100 separate research projects funded since 2015
• +2 more outcomes

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• ViralgencoreStrategic or Co-development Partner · 5 May 2026Viralgen, a Spain-based contract development and manufacturing organization (CDMO) specializing in adeno-associated virus (AAV) gene therapies, partnered with Elaaj Bio to advance ELJ-101, a preclinical-stage gene therapy program for CDKL5 Deficiency Disorder. Viralgen will provide AAV manufacturing expertise including process development, optimization, and scale-up activities. The collaboration aims to initiate the first clinical trial for ELJ-101 in early 2027.
• Oxford-Harrington Rare Disease CentreminorStrategic or Co-development Partner · 29 April 2025Majid Jafar, co-Founder of Loulou Foundation, was appointed to the Advisory Council of the Oxford-Harrington Rare Disease Centre, a partnership between University of Oxford and Harrington Discovery Institute aimed at driving rare disease breakthroughs.
• International Foundation for CDKL5 Research (IFCR)coreStrategic or Co-development Partner · 4 November 2021IFCR and Loulou Foundation announced a collaborative project to support IFCR's eight clinical Centers of Excellence serving CDKL5 Deficiency Disorder patients and families. The collaboration provides financial support for these multidisciplinary clinical centers in the US.
• CDKL5 AlliancecoreOthers · 25 October 2021The CDKL5 Alliance is a membership organization focused on CDKL5 Deficiency Disorder. The Loulou Foundation is a member of the CDKL5 Alliance and participates in collaborative initiatives.
• Elaaj BiocoreStrategic or Co-development PartnerElaaj Bio is a wholly-owned subsidiary of the Loulou Foundation, a biotechnology company focused on development of transformative treatments for CDKL5 Deficiency Disorder (CDD). It advances the investigational CDKL5 gene therapy program ELJ-101.
• University of Pennsylvania - Orphan Disease CentercoreStrategic or Co-development PartnerThe Loulou Foundation established the CDKL5 Program of Excellence at the Orphan Disease Center of the Perelman School of Medicine, University of Pennsylvania. This collaboration directs and funds the CDKL5 Pilot Grant Program and supports research coordination.
• IRDIRC (International Rare Diseases Research Consortium)minorOthersLoulou Foundation is a member of IRDIRC, an international consortium dedicated to rare diseases research.
• Rare Foundation AllianceminorOthersLoulou Foundation is a member of the Rare Foundation Alliance, affiliated with Global Genes.
• TRAIN (Therapeutics Research for AIDS and Infectious Diseases)minorOthersLoulou Foundation is a member of TRAIN, a program of FasterCures.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Cure SMA: Non-profit that funded and helped de-risk the development of Spinraza and subsequent SMA gene therapies, using a combination of grants, venture philanthropy, and direct program investment. Highly comparable model for a single rare pediatric genetic disease.
• Parent Project Muscular Dystrophy (PPMD): Disease-specific non-profit driving Duchenne muscular dystrophy research and therapeutic development, including direct funding of biotech programs. Mirrors Loulou's grant-plus-subsidiary approach for a single rare neuromuscular indication.
• Dravet Syndrome Foundation (Spain / International): Disease-focused foundation supporting research and clinical infrastructure for Dravet syndrome, a related developmental epileptic encephalopathy. Comparable in disease area, scale, and Loulou's CDO Ana Mingorance's prior role at Spanish Dravet Syndrome Foundation.
• International Foundation for CDKL5 Research (IFCR): Patient-led foundation also dedicated to CDKL5 Deficiency Disorder; operates eight US Centers of Excellence and collaborates directly with Loulou on clinical infrastructure. Most direct disease-specific peer.
• Tuberous Sclerosis Alliance: Rare-disease non-profit that combines research grantmaking with clinical centers of excellence and drug-development partnerships, including approved mTOR-pathway therapies. Comparable governance and operational footprint.
• Friedreich's Ataxia Research Alliance (FARA): Single-disease non-profit that funds academic research, coordinates a global scientific community, and partners with pharma/biotech on therapeutic development for Friedreich's ataxia. Directly analogous structure and mission to Loulou.

Others

• Orphan Disease Center (University of Pennsylvania): Hosts Loulou's CDKL5 Program of Excellence; runs the broader Pilot Grant Program infrastructure that Loulou uses to disburse research funding. Comparable as a translational research and grantmaking partner rather than a competing foundation.
• Global Genes: Alliance of rare-disease patient organizations; Loulou is a member via the Rare Foundation Alliance. Comparable as an ecosystem convener rather than a direct disease peer.

Broad incumbents

• Cystic Fibrosis Foundation: Pioneer of the venture philanthropy model in rare disease; established a captive therapeutics development arm analogous to Elaaj Bio and funded programs that led to disease-modifying CFTR modulators. Closest analogue for Loulou's philanthropharma strategy at scale.
• CHDI Foundation: Privately funded non-profit focused exclusively on Huntington's disease; runs a fully integrated drug-discovery operation and convenes a global research community. Highly comparable operating model (Loulou's CSO Daniel Lavery previously led discovery at CHDI).

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/louloufoundation
• LinkedInlinkedin.com/company/loulou-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments2 records

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Frequently asked questions about Loulou Foundation