Climb is a national
umbrella organisation working on behalf of children, young people and
families affected by metabolic diseases.
There are more than 1300
metabolic disorders, most of them chronic, progressive, disabling, severe to
very severe and more often than not, life threatening. They mostly affect
children but also adults and can occur at any time in life. There are no
treatments and no cures for most of them and they affect 25 to 30 million
people throughout Europe. Climb supports over 4000 families
throughout the United Kingdom and Europe. Worldwide the support extends to
over 6000 families and support groups.
In common with many other
patient organisations, Climb must increasingly rely on corporate
financial support for a significant proportion of its core and project
funding. It recognises that, in return, companies would expect their support
to be acknowledged publicly.
Corporate funding helps to
maintain the services of Climb but it is essential to establish rules
about such funding and about what companies may or may not expect from
Climb in return.
This policy exists:
- to clarify Climb's
position regarding commercial companies;
- to clarify Climb's
position to its members;
- to clarify Climb's
position to the general public.
Directors and staff of
Climb are expected to adhere to this policy, which will be reviewed from
time to time. The policy does not set out to provide a definition of every
possible funding opportunity but, rather, it provides a set of principles.
Climb believes it is
important to maintain co-operative relationships with commercial companies
in order to enhance communication between the families/parents/young people,
whose interests we represent, and the companies, whose decisions will affect
Climb and the commercial companies will be based on equal partnership
and will work in the interests of the families/parents/young people while
preserving Climb's independence and integrity. To ensure such a
partnership is successful each partner should learn to understand the
internal culture of, and external pressures on, the other. This should
include, however, the knowledge that the companies' profit motive may, from
time to time, be in conflict with the needs of Climb to maintain its
independence and that in such situations funding from the companies would
not be accepted.
that metabolic conditions can limit the number of companies that may be
interested in offering financial support and that the consequent
relationship between Climb and funders may appear too close and give
the impression of ownership of the organisation by particular companies. The
above policy is written to keep a transparent position regarding this
funding from companies so long as its independence is not compromised and
there is total transparency in the relationship. A contract between the
parties outlining this concept maintains clarity. Climb must not
appear to endorse products or brands, be associated with a company that is
unpopular with its public or appear to be partisan in any way. Climb
should avoid financial support from companies that make unsubstantiated or
misleading claims about their products.
Companies can be involved
in project funding, sponsorship funding, grant funding or one-off donations
either individually or collectively.
Project funding allows
Climb to develop a close, mutually beneficial relationship providing
dependable income sources over a number of years. It allows the funder to
gain public credit for their involvement while projecting the functions of
Climb in a way that appeals to company interests and maximises such
funding opportunities. Public association of one company with Climb
can also encourage other companies to initiate or increase their support in
competition. Prior agreement will have been reached as to the level of
publicity given, including the logo type used and the wording that is
credited to the company and its support.
Sponsorship funding would
apply where a single activity stream related to Climb was being
financed such as a conference or means of communication such as the
newsletter, leaflets or website. In such cases Climb controls the
wording and position of credit given or the logo type which may be used (by
Grant funding would apply
in relation to the finance of personnel including trainees, staff with a
particular job specification such as information resource and assistance
with travel expenses. In such cases acknowledgement would be as for
may not attract an obligation on the part of Climb to acknowledge
support. However this may be given by way of the Annual General Meeting,
publication in Climb's Annual Report or public acknowledgement at a
particular function (eg conference).
that companies wish to be publicly acknowledged for their financial support.
When they are referring to financial support they have given to Climb
within their own literature, the wording used and/or the Climb name
and logo cannot be published without the prior approval and agreement of the
Executive Director of Climb. Any publicity information must be
jointly agreed between Climb and the company.
When funding is
agreed/approved a contract will be negotiated between the company and
Climb taking into consideration he following principles:
- Any funding from
companies must be committed to ensuring benefits to Climb and those
it represents, projecting no adverse publicity and having no presumption
by the funder that this in any way influences Climb's policy
whether explicitly or implicitly.
- Commercial use of the
Climb name and logo by the donor must have the prior, explicit,
written approval of the Executive Director.
- Climb supports
the availability of the widest range of products, orphan medicinal
products and treatments; it does not endorse individual treatments; it
encourages active partnership between patient and health professionals and
the discussion of all available options in the interests of informed
choice on the part of the patient.
- Where more than one
branded version of a medicinal product exists, Climb encourages the
naming of all such products without prejudice.
- Climb opposes the
marketing to families/parents/young people of any treatment that has
neither undergone clinical trials nor been examined and approved by
qualified specialists in the field.
Climb cannot meet
the needs of those for whom it exists without funding. As Climb plays
a major role in the implementation of services and support within Europe it
is bound to attract the interest of industries which have a particular
investment in the development of treatments for metabolic diseases.
By adopting a transparent
policy regarding its relations with commercial companies which can be
published within its literature and on its website, Climb is creating
wider opportunities for future funding while making clear how this will not
compromise its independence and future policy decisions.