European Huntington Association

What European Huntington Association does

The European Huntington Association (EHA) is a Norway-headquartered, non-profit umbrella organization founded in 1986 that represents Huntington's Disease (HD) associations across 32 European countries. It connects, informs and represents people affected by HD — patients, pre-symptomatic gene-expansion carriers, families and caregivers — alongside the clinicians and researchers who serve them. EHA does not sell commercial products; its portfolio consists of free information and community services including HD Trial Finder (a European platform presenting all HD clinical trials in plain language), Huntington Academy (online training for caregivers and professionals), HD-CAB (global community advisory board), Moving Forward (engagement program for underrepresented groups), Active Huntingtons (physiotherapy-aligned physical activity resources), HD-R-READY (research readiness program), and a multilingual Ask the Doctor service staffed by a senior consultant.

The organization is funded primarily through donations and membership fees from its 32 national member associations, with additional support governed by a published Policy Towards Pharma. EHA delivers content across a website, five social channels (Facebook, Instagram, X/Twitter, LinkedIn, YouTube), email newsletters, webinars, and biennial conferences (Sofia 2017, Vienna 2018, Bucharest 2019, with Bucharest 2025 planned). It holds EMA-eligible organisation status, participates through EFNA in the EU HTA Stakeholder Network, and actively engages pharmaceutical sponsors developing HD therapies — Novartis (INVEST-HD/votoplam), uniQure (AMT-130 gene therapy), Prilenia/Ferrer (PRECISE-HD/pridopidine) — to communicate trial information, support recruitment, and advocate for equitable European access.

Operationally, EHA runs with a six-person staff under President Astri Arnesen (board elected April 2025), supported by a Communication Manager and PR board member, and collaborates with peer organizations including the European Huntington's Disease Network (EHDN), Huntington Disease Youth Organisation (HDYO), EFNA and EURORDIS. It has no disclosed revenue, no app, no proprietary technology stack, no AI capabilities, and no commercial customers; its value is generated through community coordination, advocacy, plain-language clinical trial information, and structured engagement between the European HD community and regulators and therapy developers.

Name

European Huntington Association

Legal name

European Huntington Association

Website

https://eurohuntington.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

The European Huntington Association is a Norway-based, 32-country umbrella organization founded in 1986 that supports Huntington's Disease patients, families, and clinicians across Europe through information platforms, advocacy, clinical-trial engagement, and regulatory representation including EMA-eligible status.

Ownership category

akta.pro rank

Headquarters

HQ city

Not specified

HQ country

Norway

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Donations and membership funding: EHA is funded primarily through donations and membership fees from its network of Huntington's Disease associations across 32 countries. The organization publishes funding sources annually and has a Policy Towards Pharma governing collaborative pharmaceutical relationships.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

European Huntington Association is a non-profit umbrella organization coordinating Huntington's Disease associations from 32 European countries. It provides free informational platforms, community programs, training resources, and advocacy services that connect HD-affected patients and families, support clinical trial participation, and advocate for equitable therapy access across Europe.

Product overview

The European Huntington Association (EHA) operates as an umbrella organization serving 32 country-level Huntington's Disease associations across Europe. Rather than offering a traditional commercial product, EHA provides a portfolio of information services, digital platforms, and community programs. Key offerings include HD Trial Finder (clinical trial discovery platform), Active Huntingtons (physical activity guidance resource), Huntington Academy (online training), HD-CAB (patient advocacy initiative), Moving Forward (community engagement project), Ask the Doctor (medical Q&A service), and various online educational resources covering sleep, nutrition, and oral care. These services are provided free of charge to support HD-affected individuals and families throughout Europe.

Differentiator

Problem solved

Functional benefit

Brands

• Active Huntington's: Physical activity and exercise resource for people with Huntington's disease developed in collaboration with physiotherapists
• Moving Forward
• HD Trial Finder
• HD-CAB
• HD-R-READY
• Ask the Doctor

Products and services

• HD Trial Finder A European online platform presenting all Huntington's disease clinical trials in plain language, helping patients and families find and understand research participation opportunities.
• Huntington Academy An online training platform offering free courses about Huntington's Disease and best care practices for caregivers, families, and healthcare professionals.
• HD-CAB (Huntington Disease Community Advisory Board) A global initiative to represent the voice of the global HD community, ensuring patient perspectives shape research and decision-making.
• Moving Forward A project focused on engaging those traditionally less involved in Huntington Disease research, amplifying underrepresented voices in the HD community.
• Ask the Doctor A confidential Q&A service where medical questions about Huntington's disease can be submitted in English, German, Slovak, Czech, and Turkish and answered by Dr. Alzbeta Mühlbäck, a senior consultant with extensive Huntington's experience.
• Active Huntington's An information and learning resource developed in collaboration with physiotherapists from the European Huntington's Disease Network (EHDN), providing guidance on physical activity, exercises, benefits, and assistance strategies for people with Huntington's disease and their caregivers.
• HD-R-READY A research and readiness project supporting Huntington's disease community involvement in clinical research.
• Online Resources Digital resources including sleep improvement tips, nutrition guidance, oral care programs, and online training materials for Huntington's families, caregivers, and medical staff.

Quantifiable outcome

• The Ask the Doctor service received questions from patients and families in 22 countries
• +2 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered core and minor.

• European Huntington's Disease Network (EHDN)coreStrategic or Co-development PartnerEHA collaborates closely with EHDN, the European Huntington's Disease Network. EHDN holds biennial congresses (e.g., 2022 Bologna, 2024 Strasbourg, 2026 Krakow) that EHA participates in and promotes. EHDN also facilitates clinical trials and research collaboration across Europe.
• Huntington Disease Youth Organisation (HDYO)coreStrategic or Co-development PartnerEHA works with HDYO on youth engagement, education, and supporting young people connected to HD across Europe. HDYO ambassadors participate in EHA activities and conferences.
• European Federation of Neurological Associations (EFNA)coreStrategic or Co-development PartnerEHA is a member of EFNA, which represents neurological associations across Europe. EHA's president attends EFNA conferences (e.g., 2026 Dublin conference) to discuss rare disease therapy access and EU Joint Clinical Assessments.
• EURORDIScoreStrategic or Co-development PartnerEHA is represented in the HTA Stakeholder Network through EFNA, which works with EURORDIS (representing rare diseases) on policy matters including Joint Clinical Assessments and equitable access to rare disease therapies.
• PrileniaminorStrategic or Co-development PartnerEHA engages with Prilenia, the company co-developing pridopidine for Huntington's Disease. EHA provides information to the HD community about clinical trials including PRECISE-HD (a new Phase III trial following EMA's 2025 decision not to approve pridopidine).
• FerrerminorStrategic or Co-development PartnerFerrer has partnered with Prilenia on the joint development of pridopidine for Huntington's Disease. EHA collaborates with Ferrer to keep the HD community informed about PRECISE-HD trial developments.
• NovartisminorStrategic or Co-development PartnerEHA partnered with Novartis to host a webinar presenting the INVEST-HD Phase III clinical trial for Votoplam (an oral HTT mRNA splice modifier). EHA facilitates community understanding of Novartis's global trial recruiting approximately 770 participants in at least 30 countries.
• uniQureminorStrategic or Co-development PartnerEHA works with uniQure to inform the HD community about AMT-130 gene therapy developments, including the therapy's RMAT designation from FDA, MHRA's positive review of the therapy's data, and the ongoing Phase I/II trials in the US and Europe.
• 32 National Huntington's Disease AssociationscoreStrategic or Co-development PartnerEHA serves as an umbrella organization connecting Huntington's Disease associations from 32 countries across Europe. These member associations include associations from countries such as Finland, France, Italy, Poland, Romania, Bulgaria, Austria, Hungary, Greece, Spain, England and Wales, Scotland, Ireland, and others.
• Huntington Association of England and WalesminorStrategic or Co-development PartnerEHA collaborates with the Huntington's Disease Association of England and Wales on shared initiatives including the ASCEND-HD mental health project and access to therapeutic interventions developed by Dr. Sarah Gunn.
• European Medicines Agency (EMA)coreOthersEHA is listed as an EMA-eligible organization, enabling it to participate in regulatory discussions and advocate for the HD community in EMA processes related to therapy approvals and Health Technology Assessments.
• UK Medicines and Healthcare products Regulatory Agency (MHRA)minorOthersEHA engaged with MHRA following uniQure's presentation of AMT-130 gene therapy data. MHRA was positive to review the data for UK market access, which EHA communicated to the HD community as an encouraging development.
• Mun-H-CenterminorStrategic or Co-development PartnerEHA references Mun-H-Center's oral care programme and assistive devices for people with Huntington's Disease as educational resources for the HD community.
• HD Community Advisory Board (HD-CAB)coreStrategic or Co-development PartnerEHA supports and promotes HD-CAB, a global initiative to represent the voice of the global HD community in research and clinical trial design. EHA volunteers serve as HD-CAB advocates and coordinators.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• European Huntington's Disease Network (EHDN): EHDN is a European research network that facilitates HD clinical research and operates biennial congresses. EHA collaborates closely with EHDN, and the two share overlapping stakeholder communities across clinicians, researchers, and patient families.
• Huntington Disease Youth Organisation (HDYO): HDYO is a global nonprofit focused on supporting young people impacted by Huntington's Disease, with overlapping patient advocacy and education mission. EHA already partners with HDYO, and the two organizations share audience and conference participation.
• Huntington's Disease Society of America (HDSA): HDSA is the largest US-based HD patient and family advocacy organization, providing support services, research funding, and education. It is the regional equivalent to EHA in North America and addresses the same patient population with similar services.

Broad incumbents

• Alzheimer Europe: Alzheimer Europe is a pan-European umbrella for Alzheimer associations and operates a comparable continental advocacy, policy, and patient engagement model for a larger neurodegenerative disease population. It is highly comparable in operating model and European patient advocacy role.
• CHDI Foundation: CHDI Foundation is a major privately-funded biomedical organization focused exclusively on developing HD therapeutics. It is a comparable HD-focused nonprofit but operates at substantially larger scale on the research funding side.
• European Federation of Neurological Associations (EFNA): EFNA is the umbrella federation of European neurological patient associations, of which EHA is a member. EFNA operates at the broader neurology advocacy layer, sharing policy and HTA engagement activities with EHA.
• EURORDIS – Rare Diseases Europe: EURORDIS is the European umbrella for rare disease patient organizations, of which EHA is a member. It is a broader peer operating at the rare disease category level, with overlapping advocacy, HTA engagement, and policy functions.
• Hereditary Disease Foundation: The Hereditary Disease Foundation is a US-based nonprofit that funds HD research and convenes the scientific community. It operates in the same disease category with a complementary research-grant and convening role.

Emerging players

• Association for Frontotemporal Degeneration (AFTD): AFTD is a US patient advocacy nonprofit for frontotemporal degeneration, sharing analogous patient support, education, and research advocacy functions with EHA. It is comparable as a model for disease-specific advocacy nonprofit structure, though in a different neurodegenerative condition.

Others

• Cure Huntington's Disease Initiative (CHDI): Already listed above; redundant placeholder removed.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/EuroHuntington
• YouTubeyoutube.com/channel/UCoun6muJpIOHXRGrx03cDEw
• Facebookfacebook.com/EuroHuntington
• LinkedInlinkedin.com/company/european-huntington-association
• Instagraminstagram.com/theeurohuntington/?igshid=1juue004yxpjh

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about European Huntington Association