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March 2010

EURORDIS Policy on Financial Support by Commercial Companies

Below are extracts from and highlights of EURORDIS policy on financial support by commercial companies.

You can also read the code of practice between patient organisations and the healthcare industry.

EURORDIS funding

Background and funding of core operations

EURORDIS needs funds to carry out its mission. EURORDIS played a major role in the adoption of the EU Regulation on orphan medicinal products, is involved in its implementation, and is widely acknowledged as being the European voice of people living with rare diseases. It is therefore bound to attract the attention of companies which have a particular interest in the development of treatments and other services for rare diseases.

EURORDIS funding to cover the costs of its core operations is independent from any corporate funding or public funding. These core operations include governance, policy development and representation of patient interests particularly at the European Commission, European Parliament, European Medicines Agency and its Committee for Orphan Medicinal Products, and other European working groups as well as patient or professional forums.

EURORDIS is a patient-driven organisation, very careful about maintaining its independence and making choices based on patients’ needs and perspectives.

Funding for core operations is provided by EURORDIS’ members, in particular by the AFM – the French Muscular Dystrophy Association – which has funded EURORDIS since its creation. Since 2002, this funding has taken the form of a pluri-annual collaboration agreement between EURORDIS and the AFM.

In common with many other patient organisations, EURORDIS will increasingly expand its financial support from commercial companies for a significant proportion of its activities and project funding.

About EURORDIS’ Policy on Funding by Commercial Companies

It is essential to establish rules about corporate funding and in particular about what companies may, or may not, expect from EURORDIS in return.

This policy exists in order to clarify EURORDIS’ position as regards commercial companies and to ensure that EURORDIS’ members, the general public, and institutions all know EURORDIS’ position, while enabling EURORDIS senior management to perform their duties according to clear rules validated by the Directors.

Directors and staff of EURORDIS are expected to adhere to this policy, which is reviewed as needed. The policy does not set out to provide a definition of every possible funding opportunity or relationship, but rather to define a set of principles.

Policy Statements

Principles in relationships with Commercial Companies

EURORDIS welcomes funding from companies as long as the relationships between EURORDIS and commercial companies are based on the following principles:

  • a public health objective driven by patient needs
  • full independence of EURORDIS
  • respect
  • mutual benefit, a win-win relationship
  • accountability and transparency

EURORDIS believes it is important to establish and maintain relationships with commercial companies in order to enhance communication between the patients, whose interests we represent, and the companies, whose decisions will affect the provision of health services or treatments for patients.

EURORDIS supports the availability of the widest range of orphan medicinal products, other medicinal products, treatments and health services; it does not endorse individual medicinal products or treatments; it encourages active partnership between patient and health professionals and discussion of all available options to ensure patients make informed choices.

Relationships between EURORDIS and the commercial companies will be based on partnerships while preserving EURORDIS’ independence and integrity. Any funding from a company must be committed to the benefit of the patients EURORDIS represents, must not entail adverse publicity, and can in no way influence EURORDIS’ policy, positions or decisions, whether explicitly or implicitly.

Partnerships will focus on broad interest activities in the areas of rare diseases, treatments, public awareness, patient support, social, health and educational services.

To ensure a successful partnership each partner should learn to understand the other’s internal culture and external constraints.

In order to maintain EURORDIS’ full independence, the organisation funding by its members -the patient organisations -, by public national and community funding, by corporate funding and by other private sources should be balanced.

In order to avoid risks inherent to a relationship with a single company, or a limited number of companies, EURORDIS will diversify its types of funding by commercial companies, and progressively increase the number and profiles of corporate sponsors.

Refusal and Exclusion
EURORDIS does not endorse medicinal products, brands, or health services and must not appear to do so, nor to be associated with a company that is unpopular with its public, nor appear to be in any way partisan. EURORDIS will refuse financial support from companies that are a public health risk, or from companies that make unsubstantiated or misleading claims about their products.

A companies’ profit motive may evolve over time and conflict with EURORDIS’ need to maintain its independence. In such situations funding from the companies would not be accepted or would be discontinued.

EURORDIS Round Table of Companies inclusion and exclusion decisions are formally made by EURORDIS. Exclusion can be decided by EURORDIS on what it considers a breach of the EURORDIS Round Table Code of Conduct, or of the EURORDIS Policy on Financial Support by Commercial Companies.

Types of Financial Support by Commercial Companies
See policy for full details

Companies can be involved in:

  • project funding
  • funding of special initiatives or activities
  • membership in the EURORDIS Round Table of Companies
  • one-off charitable donations

Transparency Policy
By adopting a transparent policy regarding its relations with commercial companies which can be published within its literature and on its website, EURORDIS is creating wider opportunities for future funding while making clear that this will not compromise its independence and future policy decisions.
The Annual Financial Statements of EURORDIS reflect the level of funding received from corporate sponsors and provide fair and reliable information to its members and the public. This will appear in both the printed report and on the EURORDIS website.

As regards project funding, the financial support by commercial companies will appear in the reports to the members and the public, in public presentations and in other relevant documents.

As regards sponsorship, the financial support by commercial companies will appear in the relevant documents for the event or the communication tools sponsored.

Significant one-off donations and non-monetary contributions will be listed and given at the time of the EURORDIS Annual General Assembly.

Membership in the EURORDIS Round Table of Companies will be noted in the relevant information to the members and to the public, such as in the eNews and on the website.

Permissions Policy for use of EURORDIS’ documents
EURORDIS is regularly asked by other NGOs to provide its Policy on Financial Support by Commercial Companies and Code of Conduct to help them improve their governance and transparency practices. Any organisation is free to do so, as long a previous agreement is sought, and EURORDIS acknowledged.
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