This statement outlines how EFNA works with partners who provide funding to support the implementation of our annual workplan and arising activities.
EFNA funding arises from a small number of sources, including the pharmaceutical industry, the European Academy of Neurology and membership fees.
It is important to remember that EFNA is an extremely broad-based organisation, which attempts to improve the quality of life for people in Europe living with neurological illness. Our projects are equally broad and tend to deal with issues generic to all or several neurological conditions – rather than focusing on specific drugs or other treatments.
In order to make funding partnerships work in practice, to ensure the integrity of both the funder and EFNA is maintained, and to demonstrate to other stakeholders that our relationships are absolutely scrupulous, we commit to the below principles in relation to our funding:
EFNA commits to ensuring that our projects are supported by a consortia of funding partners, and that no individual company/organisation provides more than 25 percent of our annual income in one year.
A written agreement between the funder and EFNA outlining the nature and amount of the funding and the period covered – is required before EFNA will accept funding from any source. The funding sources will be acknowledged with thanks on relevant publications linked to an event/initiative. The amount of funding received and the sources are included in the EFNA Annual Report and published separately on the EFNA website within one month of the Annual Accounts being approved by the Annual General Assembly of the following year.
EFNA retains the right to take up to 20% of funds raised for a particular project/initiative as an administrative fee for coordinating the activity, and covering core costs. This should ensure that EFNA maintains a constant minimum reserve – as outlined in its reserves policy.
Relationships between non-governmental organisations (NGOs) and pharmaceutical and biotech companies can and should be based on equal partnership. Both sides must be prepared to move beyond the NGOs being passive recipients of money to a scenario where the two work together on policy development and practical initiatives, in the interests of the patients and their carers whom the NGO represents. While preserving its independence, NGOs should recognise that pharmaceutical and biotech companies have to be profitable, and have their own particular marketing agenda, to which no NGO should ever feel obliged to conform. Funding should be rejected if the alternative is compromising the NGOs independence in any way.
EFNA will apply the EFPIA Code of Good Practice on working with patients’ organisations in relation to any funding received from the pharmaceutical industry whilst also building in the above principles adopted, and other relevant European codes.
ACKNOWLEDGEMENT OF FINANCIAL SUPPORT
EFNA would like to acknowledge the below support in 2018:
TOTAL (+ deferred income, – management fees received) 409,488.11
|Income from other sources|
|(reimbursements, payment differences, currency conversion, etc.)|