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POLICY TOWARDS PHARMA

EHA policy towards commercial entities, revised 2025

  • The European Huntington Association (EHA) has one main objective for everything we do: To improve the lives of people affected by HD.  We serve the community and strive to be an inclusive and representative voice in all our partnerships and collaborative activities.  We value our integrity and independence and will not under any circumstances deviate from these principles.  
  •  Principles to be applied by EHA in its relationship with commercial companies: 
    • EHA recognises that the pharmaceutical industry plays a key role in drug development and consequently drug safety.  EHA is actively working to implement patient involvement and thus influence drug development to incorporate best possible patient needs and values.  We want drug development to be done with us and not just for us.  
    • EHA believes that patient involvement and collaboration in drug development is needed to accelerate the realization of new therapies.  
    • EHA sees corporate donation programmes as a good practice in corporate governance and one of the ways commercial companies can support people affected by the diseases they are working on, or redistribute to the European Huntington`s disease community some of the profits they are making
    • EHA welcomes financial support by commercial companies as long as the relationship between EHA and these companies is based on the following principles: 
      •  relevance of a health objective driven by patient/family needs and ultimately serve the community 
      • full independence of EHA and thus does not influence our policy, positions or decisions, whether explicitly or implicitly.
      • Is based on partnership on equal basis
      • accountability and transparency 
      • does not contain any form of favouritism/competitive advantage or product promotion.

Funding Practise

All funding agreements are done to ensure all objectives and conditions are clear to both parties and does not compromise any of EHA`s principles and independence.  

EHA seeks to have multiple funders behind the activities/projects we do to avoid any suspicion of bias and preference.  

No sole funder contribution can exceed 30% of our total annual income.  

Transparency is a key element of our policy toward commercial partners. The EHA coordination team (CEO) reports on a regular basis to the board about ongoing discussions and contracts.  On an annual basis we report about all financial income sources and expenditures to the EHA members at the general assembly. The key numbers of income sources are published on our website.  

  • A voluntary organisation’s good name is its most valuable asset. The effect of laws dealing with non-profit organisations, as well as agreed best practice, both preclude the exploitation of a voluntary organisation’s name for non-charitable purposes. EHAs name must not be used to imply approval or endorsement of any of the donor products or policies, without the board’s prior written approval.

Product Endorsement

EHA endorses no individual treatments, because people living with Huntington’s Disease need the widest possible range of treatment options, to integrate them as they wish. These may include medicines, surgery, complementary therapies, lifestyle changes, and non-therapeutic products

We encourage active partnership between patient, carer and health professional as well as discussion of all available options to promote informed choice by the patient.

Where medication exists in more than one version we encourage the use, in communications with patients, of either the scientific name or the several different brand names. Publications should show impartiality.

EHA supports the proper licensing of medicines and believes that the marketing of non-drug treatments to the public requires similar rules and standards.

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