
MYELOMA EURONET The voice of myeloma patients in Europe
Policy on Funding Arrangements with Commercial Companies
Introduction
Myeloma Euronet welcomes corporate donations, grants and sponsorship to fund certain projects and to enable the Network to grow and develop. This document outlines Myeloma Euronet's policy on commercial funding and provides a set of principles that will be used to guide Myeloma Euronet's decisions. It does not set out to provide a definition of every possible funding opportunity. This policy will apply to all potential relations with any company from any industry.
This policy is based on the European Cancer Patient Coalition's Paper on Funding Arrangements with Commercial/Corporate Organizations, EURORDIS's policy on corporate sponsorship and the recommendations of the UK's Long Term Medical Conditions Alliance.
Purpose of Policy
- To ensure that Myeloma Euronet has a consistent and transparent approach to working with commercial companies.
- To ensure the Network maintains its independence from commercial influences.
- To clarify Myeloma Euronet's position to its member organizations, commercial companies and the wider public.
- To provide clear direction for the Network's Board Members, enabling them to instigate relations with commercial companies with the full backing of the Network, but without the constant need for approval from its members.
- Myeloma Euronet Board Members are expected to adhere to the policy that may be revised over time as circumstances demand.
Funding: Categories
There are four different funding categories, including:
Project funding is where the Network will establish a collaborative partnership with a commercial company to undertake a project relating to an issue of mutual interest. The following features will apply to this relationship:
- Myeloma Euronet maintains editorial control over all materials produced in connection with the project.
- The company will have representation on the project steering committee
- The sponsor's logo is used.
- Myeloma Euronet will not endorse or promote individual products or services.
- The wording and/or position of the credit will be agreed in negotiations with the company.
- Myeloma Euronet and the commercial partners will both benefit from the relationship.
Sponsorship is where a company funds a single activity such as a meeting or newsletter. In this case the following will apply:
- The company has no involvement in the activity for which the sponsorship is granted.
- Myeloma Euronet maintains editorial control over all materials or meeting programmes.
- Myeloma Euronet will not endorse or promote the sponsor's products or services.
- The sponsor's logo is used.
- The wording and/or position of the credit are part of the sponsorship negotiations with the company.
- Myeloma Euronet and the commercial partners will both benefit from the relationship.
Unrestricted grants are defined where all of the following apply:
- The company has no involvement in the project for which the grant is used.
- The grant will be acknowledged.
- The company's logo is not used.
- The Network controls the wording and position of the credit.
Companies may offer financial donations and in-kind support to the Network however there is no obligation on the part of the Network to acknowledge the support, although Myeloma Euronet may decide to do so.
Funding: Guiding Principles
Myeloma Euronet will foster dialogue, and establish collaborative partnerships, with the many companies whose commercial decisions affect the chance of survival and quality of life of millions of European cancer patients. Patient organization-pharmaceutical company partnerships are sometimes viewed with scepticism by decision-makers and the general public. Some believe that pharmaceutical companies coerce patient organizations into conforming to their marketing agenda. In order to protect the Network's reputation and demonstrate that Myeloma Euronet does not conform to commercial agendas, the Network will adhere to the following principles when accepting or soliciting or accepting project funding, sponsorship, grants or donations from commercial companies:
- Myeloma Euronet will maintain an open and transparent relationship with all commercial partners.
Before accepting funding from a commercial company the Board must be satisfied that:
- There are strong grounds for believing the donation; grant or sponsorship will result in benefit to the Network and its members.
- No adverse publicity will result from accepting the funds.
- Myeloma Euronet will closely review all potential commercial partners' corporate governance policies, their reputation in working with patient organizations and their environmental policies and practices. If there is any cause for concern, funds will either be accepted on a ‘no acknowledgment' basis or the Network will reject the funds.
- Myeloma Euronet will not knowingly accept any type of funding from a company that produces or sells tobacco brands, or receives funding from their sales.
- Myeloma Euronet will not endorse or promote individual products or services.
- A company's support will be acknowledged in an appropriate way following discussions with the company concerned.
- Myeloma Euronet will sign a memorandum of agreement with all commercial partners outlining each partner's contribution and responsibilities. The commercial partner must agree to abide with the guidelines outlined in appendix 1.
- If a company makes any attempt to coerce the Network to conform to its marketing agenda, either explicitly or implicitly, or does not conform to the memorandum of agreement, Myeloma Euronet will reject the funds or terminate an on-going project.
- Where possible, Myeloma Euronet will solicit funding from consortia composed of two or more companies from the same industry.
Appendix 1
Guidelines for Commercial Companies on Working with Myeloma Euronet
The Network will not embark upon or continue with any sponsorship, grant making or collaborative venture that might damage its reputation or result in the dissemination of biased and inaccurate information to the general public and cancer patients. Therefore, when working with the Network, commercial companies should adhere to the following guidelines:
- The Network must be consulted whenever and wherever its name is used, particularly in external communications. Approval must be sought for any copy produced which refers to a Network initiative supported by a commercial organization.
- At no time can the Network's logo be used without express written permission.
- At no time can press releases be issued which refer to the Network without our prior approval. Likewise suggested quotes can be prepared but must always be agreed by the Board.
- The Network retains a veto over all materials produced in connection with an initiative. Adequate approval time needs to be allowed for this as it may require approval from one or more Board Members or require feedback from Myeloma Euronet's Medical Advisory Committee.
- Where more than one branded version of a product exists, any materials produced, as part of an initiative will use either the scientific name or several different brand names. It may not be practicable to mention every brand at every stage in a publication but overall the effect will be one of impartiality.
- The Network is happy to work with PR/advertising and marketing agencies of commercial organizations once a project is underway. However in the first instance when a project is being planned or suggested the Network requires a representative from the company to be present as well as the agency.
- One point of contact should be identified within the company and/or agency to liaise with the appropriate opposite number in the Network. Clear lines of communication need to be established at an early stage with respective responsibilities and assignments agreed to ensure smooth progress with a project.

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