European Huntington's Disease Network

What European Huntington's Disease Network does

EHDN is an independent nonprofit research network dedicated to advancing Huntington's disease (HD) research, conducting clinical trials, and improving care for people impacted by the disease. The network was constituted in 2006 at a plenary meeting in Blankenberge, Belgium (with firmographic records tracing its origin to 2003), and operates as a virtual pan-European (and selectively global) infrastructure connecting HD clinicians, researchers, patients, and families. Its physical headquarters are located at Universitätsklinikum Ulm, Department of Neurology, Germany, with Central Coordination staff distributed across Europe. The network is governed by an elected Executive Committee, with scientific and ethical oversight from the Scientific and Bioethics Advisory Committee (SBAC).

The network's core platform is Enroll-HD, a global observational study that succeeded REGISTRY and provides standardized longitudinal clinical data and biosamples from 30,511 participants across 112,992 study visits (PDS7 dataset), making it one of the largest HD cohort datasets globally. EHDN maintains 150+ clinical sites across 13+ language areas (including Europe and Australasia), supported by Language Area Coordinators. It operates 18 working groups and 6 task forces covering specialized HD research areas (e.g., Advanced Therapies, Behavioural Phenotype, Cognitive Phenotype, Physiotherapy, Occupational Therapy), and provides proprietary clinical assessment tools (HDCC, QoL-HD, PBA-s) along with annual UHDRS motor rater certification. For clinical trial sponsors, EHDN offers protocol endorsement, feasibility assessment, operational support, recruitment services, and rater training; pharmaceutical partners referenced include Roche, Prilenia, uniQure, and Skyhawk Therapeutics.

EHDN's business model is nonprofit and member-based: no fees are charged for membership or service access, and the network is primarily funded by CHDI Foundation as sponsor. Customer segments include (i) HD patients and families (access to clinics, research participation, support resources), (ii) HD clinicians and researchers (access to longitudinal data, biosamples, working groups, fellowships, and seed funds up to €75,000), and (iii) clinical trial sponsors (pharmaceutical and academic institutions seeking protocol endorsement and operational support). Distribution occurs via the member portal (euro-hd.net), Language Area Coordinators, clinical site network, biennial Clinical Research Congresses, and direct engagement with sponsors. Communication is maintained through a 13+ language website, quarterly newsletter (Issue 58 published July 2026), YouTube, Bluesky, and LinkedIn channels.

Name

European Huntington's Disease Network

Legal name

European Huntington's Disease Network

Website

https://ehdn.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

51–100 employees

Short description

EHDN is an independent nonprofit research network coordinating Huntington's disease research, clinical trials, and care improvement across 150+ clinical sites in Europe and beyond, primarily funded by CHDI Foundation and operating the global Enroll-HD observational study.

Ownership category

akta.pro rank

Product category

Clinical Research Services

SIC

Services-Health Services (8000)

akta.pro primary industry

Health Systems Strengthening & Universal Health Coverage (UHC) Partnerships (HLAJAOAL)

Keywords

• Huntington's disease research
• Clinical trial services
• Rare disease network
• Observational studies
• Clinical rater training

Headquarters

HQ city

Ulm

HQ country

Germany

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Revenue model

1. CHDI Foundation Funding: The network operates as a nonprofit and is primarily funded through CHDI Foundation sponsorship.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

EHDN is an independent nonprofit network that advances Huntington's disease research, conducts and supports clinical trials, and improves patient care. It operates a virtual pan-European infrastructure providing clinical trial services (protocol endorsement, feasibility assessment, operational support, recruitment, rater training), access to longitudinal clinical data and biosamples through the Enroll-HD and REGISTRY observational studies, seed funding up to €75,000, working groups, a fellowship programme, clinical assessment tools (HDCC, QoL-HD, PBA-s), and evidence-based clinical guidelines.

Product overview

EHDN is a nonprofit network dedicated to advancing research, conducting clinical trials, and improving care for people impacted by Huntington's disease. The organization operates as a virtual network offering a comprehensive portfolio of clinical research services including clinical trial endorsement and support services, access to longitudinal clinical data and biosamples from REGISTRY and Enroll-HD studies, grant management, seed funding up to €75,000, clinical assessment tools (HDCC, QoL-HD, PBA-s), UHDRS motor certification, and 17 specialized working groups plus 6 task forces. EHDN also provides educational resources through clinical guidelines, newsletters, congress meetings, and event recordings.

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• Over 30,000 HD study participants in Enroll-HD with 112,992 study visits - one of the largest HD cohort datasets globally
• +3 more outcomes

Named customers1 record

Segments3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

Partnerships

Two partnerships are on record, tiered minor and core.

• Factor-HminorStrategic or Co-development PartnerFactor-H is a humanitarian nonprofit organization focused on alleviating the impact of extreme poverty on HD-affected families, particularly in Latin America. EHDN directs community members to Factor-H for information about Latin American HD families.
• Enroll-HDcoreStrategic or Co-development PartnerEnroll-HD is the successor study to REGISTRY, run by EHDN in collaboration with CHDI Foundation. It is a global HD observational study ensuring worldwide standardized collection of high-quality longitudinal clinical data and biosamples from HD family members and controls.

Scale indicators6 records

Recent moves5 records

Expansion highlights6 records

Direct peers

• Critical Path Institute: C-Path is a nonprofit consortium that builds data-sharing and regulatory-grade research networks across multiple diseases, mirroring EHDN's model of standardized data, biomarker qualification, and consortium-led clinical trial infrastructure.
• Parkinson's Progression Markers Initiative (PPMI): PPMI is a landmark observational study analogous to Enroll-HD, collecting longitudinal clinical, imaging, and biosample data from Parkinson's patients and at-risk individuals to accelerate therapeutic development.
• Alzheimer's Disease Neuroimaging Initiative (ADNI): ADNI operates a similar standardized longitudinal observational study and data-access model for Alzheimer's disease, providing researchers and sponsors with shared infrastructure analogous to EHDN/Enroll-HD.
• TREAT-NMD: TREAT-NMD is a neuromuscular-disease research network offering registries, standards, and clinical trial support services across European sites — a direct structural analog of EHDN's network model for a different disease area.

Broad incumbents

• Huntington's Disease Society of America (HDSA): HDSA is the largest US-based patient advocacy and research funding organization for Huntington's disease, operating parallel clinics, research programs, and patient services comparable to EHDN's mission but US-centric.
• Hereditary Disease Foundation: HDF is a nonprofit that funds basic and translational research into Huntington's disease and related genetic disorders, providing grant mechanisms analogous to EHDN's Lesley Jones Seed Fund.

Regional players

• European Huntington Association (EHA): EHA is the pan-European patient advocacy body for Huntington's families, partnering with EHDN on community engagement and representing the patient voice within EHDN's governance structure.
• Huntington Society of Canada: HSC is a Canadian patient advocacy and research funding organization with parallel services (family support, research grants, clinical resources) to EHDN's patient and clinician segments.
• Factor-H: Factor-H is a humanitarian nonprofit addressing HD-affected families in Latin America; it partners with EHDN to extend the HD community's reach into underserved geographies.

Others

• CHDI Foundation: CHDI is EHDN's primary sponsor and operational funder rather than a peer; included as an ecosystem enabler whose continued support underpins EHDN's entire operating model.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xbsky.app/profile/ehdn-news.bsky.social
• YouTubeyoutube.com/channel/UCVCqBiSsRcEeRau0-i-aPfw
• LinkedInlinkedin.com/company/european-huntingtons-disease-network

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about European Huntington's Disease Network