This document consists in the code of conduct (the “Code of Conduct”) of the European Liver Patients’
Association (“ELPA”). It includes the code of conduct of ELPA Directors as well as the code of conduct
applicable to interactions between the Pharmaceutical Industry and ELPA.
The Code of Conduct applies to ELPA’s directors (the “Directors”) and its application has been extended
to all staff of ELPA.
The latest wording of the Code of Conduct was adopted by ELPA’s general meeting (the “General
Meeting”) held on 24 February 2022 and subsequently signed by ELPA’s President. This version enters
into force on 24 February 2022.
1. Purpose
1.1. The purpose of this Code of Conduct is to define the expected standard of professional and ethical
conduct, communications and proper practice of the ELPA Directors and staff.
1.2. The purpose of this Code of Conduct is also to protect the integrity of ELPA’s decision-making
processes and reputation.
1.3. This Code of Conduct is not intended to supersede but rather be used alongside ELPA’s articles of
association and other relevant regulations.
2. Principles
2.1. ELPA is committed to the adoption of professional and ethical conduct, communications and proper
practice in all areas of its responsibilities and authority.
2.2. Any issue which potentially presents a conflict of interest, an ethical dilemma or might otherwise
impact on the reputation of the organisation must be openly disclosed and discussed in an honest and
comprehensive manner.
2.3. In all cases where there is a conflict of interest between ELPA Director’s personal or professional
interests and the interests of the organisation, the interests of ELPA shall prevail.
2.4. Where ELPA’s board of directors (the “Board of Directors”) is of the opinion that a Director has
acted in a manner prejudicial to the interests and reputation of ELPA, this may be taken to the General
Meeting. The Director may be removed by decision of the General Meeting, where a decision is reached
by at least three-quarters of ELPA’s full members (the “Full Members”), either present or represented.
3. Process and Guidelines for Professional and Ethical Conduct, Communications & Proper Practice
3.1. All ELPA Directors and staff are required to:
3.1.1. Act honestly and in good faith at all times in the best interests of ELPA and for a proper
purpose.
3.1.2. Be diligent and attend, whenever possible, not less than 80% of Directors’ Meetings and
other ELPA events to which they are invited. Sufficient time should be devoted to preparing for
these meetings to facilitate full participation.
3.1.3. Ensure scrupulous avoidance of deception, illegal, unprofessional or unethical practice or
any other behaviour that is, or might be construed as, less than honourable in the pursuit of
ELPA business.
3.1.4. Not disclose to any other person, confidential information other than as agreed by the
Board or as a required by law. All Board of Directors documents and discussions should be
considered confidential unless otherwise agreed in writing.
3.1.5. Act in accordance with their statutory duties and comply with all relevant legislation,
taking into account the spirit as well as the letter of the law and recognising both legal and
moral duties of the role.
3.1.6. Abide by Board of Directors decisions and not express dissent after the decisions are
made, either vis-à-vis other Board members, ELPA members or staff.
3.1.7. Not do anything that in any way undermines ELPA or harms its public image.
3.1.8. Make every reasonable effort to ensure that ELPA does not raise community or
stakeholder expectations that cannot be met or fulfilled.
3.1.9. Ensure that all staff employed by ELPA are treated with due respect and that their
requests are complied with in a timely manner.
3.1.10. Ensure all communications as ELPA representative are respectful and meet an
acceptable standard of evidence based information and generally accepted research.
3.1.11. At all times act in accordance with high standards, and in the best interest of ELPA.
3.2. All communications, whether written or oral, must reflect the Board of Directors decisions.
3.3. A Director cannot propose to any stakeholders (be it industry, institutions, other associations, etc.)
any activity and/or fundraising proposal on behalf of ELPA without the consent of the President. This
includes any activity where the ELPA logo is used or ELPA members are involved.
3.4. Given that Directors not only work for ELPA, but also work for their own associations, and as the
stakeholders involved are common to both ELPA and the national associations it is essential that any
discussions had with stakeholders are carefully managed to ensure they do not result in interference or
loss for ELPA and, vice-versa, for the national associations. In order to ensure there is no conflict of
interest and that Directors are able to fulfil the requirement of total commitment to ELPA, the Directors
should not, at the same time as fulfilling their mandate with ELPA, be members of the board or other
bodies of other European or international associations.
All communications, whether written or oral, must reflect the Board decisions.
A member of the Board cannot propose to any stakeholders (be it industry, institutions, other associations, etc.) any activity and/or fundraising proposal on behalf of ELPA without the consent of the President and/or CEO. This includes any activity where the ELPA logo is used or ELPA members are involved.
Given that Board members not only work for ELPA but also work for their own associations, and as the stakeholders involved are common to both ELPA and the national associations, it is essential that any discussions had with stakeholders are carefully managed to ensure they do not result in interference or loss for ELPA and, vice-versa, for the national associations. In order to ensure there is no conflict of interest and that Board members are able to fulfil the requirement of total commitment to ELPA the Board members should not, at the same time as fulfilling their mandate with ELPA, be members of the board of other European or international associations.
4. Process and Guidelines for Conflicts of Interest
4.1. Conflicts of interest may occur when:
4.1.1. A member of staff or a Director has personal or professional interests that:
a. are at odds, or have the potential to be at odds with the best interests of ELPA; or
b. arise in situations where they have divided loyalties
4.1.2. A Director, or their immediate family, or close friend, has business interests, (e.g.
companies and/or organisation she/he is involved with) and stands to gain financially from any
business dealings, programmes or services provided to ELPA;
4.1.3. A Director offers professional services to ELPA and is financially compensated for these
services; or
4.1.4. Any information, received through involvement in the Board of Directors is used by oard
Directors, their organisations or networks for personal, professional or strategic advantage.
4.2. All Directors are required to:
4.2.2. Declare all actual or potential interests that could result in a conflict between personal
and professional priorities and the priorities of ELPA.
4.2.3. Declare awareness of a real or potential conflict of interest of another Director who has
not otherwise declared such.
4.3. The Board of Directors shall:
4.3.1. Start each board meeting with a request of those present to declare any current or
potential conflicts of interest.
4.3.2. Determine whether or not a declared conflict of interest is of material significance to
either the individual Directors or to another organisation/interest with which that individual is
connected and shall advise the Board of Directors accordingly.
4.3.3. Decide if the individual Director shall vote on any matter relating to an identified conflict
of interest. In addition the Director will only be privy to any related discussion with previous
Board approval.
4.3.4. Determine what records and documents related to the matter will be made available to
the Board of Directors.
4.3.5. Ensure all such occurrences are recorded in the minutes.
CODE OF CONDUCT IN RELATION TO INTERACTIONS BETWEEN THE PHARMACEUTICAL INDUSTRY AND ELPA
Article 1 – Area of application
This code of conduct contains the general principles which govern the relationship between a patient
association such as ELPA and a pharmaceutical company. It applies to all interactions between ELPA and
pharmaceutical companies.
Article 2 – Respect
The patient associations as well as the pharmaceutical industry recognize that each has its own specific
role in the field of healthcare. They respect the respective particularities, the integrity, the missions, the
goals and the responsibilities of each as set out in their governing documents.
Article 3 – Independence
As a governing principle, the independence of ELPA, its health policy objectives, its communication and
public relation activities must always be preserved during all interactions and relationships between
patient associations and the pharmaceutical industry, this applies in particular for support in form of
donations, unrestricted grants etc.
Employees or directors of a pharmaceutical company cannot exercise any role within a patient
organization, except when invited by the patient organization to consult on a special issue.
Article 4 – Transparency
In relations between patient associations and the pharmaceutical industry in general, and in the case of
all forms of support in particular, there must be complete transparency.
It follows that:
a) The terms of any support must be set out in writing in an agreement between the patient
organization and the pharmaceutical company.
b) This agreement must comprise a precise description of the rights and obligations both of the
patient organization and of the pharmaceutical company, including the type of support.
c) When support is given for a concrete activity, the patient organization must clearly state that
this activity was supported by the pharmaceutical company concerned. The obligation to do
this must be explicitly mentioned in the agreement. In line with Article 3, ELPA is responsible
for the content and organization of all activities supported by the industry. Such activity cannot
be actively organized by the pharmaceutical industry with ELPA being invitee only.
d) When support is not provided directly but instead through the intermediary of a third party,
this must be clear from the agreement.
e. The support by the pharmaceutical company should be published in line with the local and
global transparency guidelines and directives with regard to such activities
Article 5 – Promotion
The direct or indirect promotion of any prescription medicines is forbidden.