Policy on funding

Geschreven door tvdwal | 20 maart 2010

The European Li Fraumeni Families Foundation ( ELFF) welcomes corporate donations, grants and sponsorship to fund certain projects and to enable the foudationt o grow and develop. This document outlines ELFF policy on commercial funding and provides a set of principles that will be used to guide ELFF 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 UK Breast Cancer Coalition’s Policy 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 this Policy

• To ensure that ELFF has a consistent and transparent approach to working with commercial companies.
• To ensure the Foundation maintains its independence from commercial influences.
• To clarify ELFF position to its member organizations, commercial companies and the wider public.
• To provide clear direction for the ELFF Board Members, enabling them to instigate relations with commercial companies with the full backing of the Foundation, but without the constant need for approval from its members.

ELFF 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 - where the Foundation 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:

• ELFF 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. ELFF
• 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.
• ELFF and the commercial partners will both benefit from the relationship.

Sponsorship - 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.
• ELFFmaintains editorial control over all materials or meeting programmes.
• ELFF 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.
• ELFFand the commercial partners may 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 Coalition controls the wording and position of the credit.

Companies may offer financial donations and in-kind support to the Coalition however there is no obligation on the part of the Coalition to acknowledge the support, although ELFF may decide to do so.

Funding: Guiding Principles

ELFF will foster dialogue, and establish collaborative partnerships, with the many companies whose commercial decisions affect the chance of survival and quality of life of many of European Li-Fraumeni families,  Pharmaceutical company partnerships are sometimes viewed with skepticism 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 Foundation reputation and demonstrate that ELFF  does not conform to commercial agendas, the Foundationwill adhere to the following principles when accepting or soliciting or accepting project funding, sponsorship, grants or donations from commercial companies:

• ELFF 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 Coalition and its members.
  • No adverse publicity will result from accepting the funds.
• ELFF 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 Coalition will reject the funds.
• ELFF will not knowingly accept any type of funding from a company that produces or sells tobacco brands, or receives funding from their sales.
• ELFF 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.
• ELFF 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 Foundation  to conform to its marketing agenda, either explicitly or implicitly, or does not conform to the memorandum of agreement, ELFFwill reject the funds or terminate an on-going project.
• Where possible, ELFF will solicit funding from consortia composed of two or more companies from the same industry.

Please see also ELFF 's Transparency Statement

Appendix 1:
GUIDELINES FOR COMMERCIAL COMPANIES ON WORKING WITH ELFF

The Foundation 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 Foundation commercial companies should adhere to the following guidelines:

1. The  Foundation 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 Foundation initiative supported by a commercial organization.
2. At no time can the Foundation logo be used without express written permission.
3. At no time can press releases be issued which refer to the Foundation without our prior approval. Likewise suggested quotes can be prepared but must always be agreed by the Board.
4. The Foundation 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 ELFF Medical Advisory Committee.
5. 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.
6. The  Foundation 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 Foundation requires a representative from the company to be present as well as the agency.
7. One point of contact should be identified within the company and/or agency to liaise with the appropriate opposite number in the Foundation. 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.