Transparency Statement: Funding and Collaborative Working

Metabolic Support UK is committed to being transparent about how it is funded, and its collaborations with external organisations, including sponsorship and joint working.

Metabolic Support UK is an independent charity committed to working with and advocating for patients living with Inherited Metabolic Disorders (IMDs) and their families.  In addition to the support of the community via fundraising, donations and legacies, we generate funds through grants, sponsorship, partnerships and joint working with external organisations. These organisations can include industry partners such as pharmaceutical companies developing medicines for IMDs.  This funding is crucial, ensuring that we achieve the balance between delivering impactful services and programmes to meet our strategic objectives, with the long-term sustainability of the charity.

The following points outline how we work with other organisations to ensure that our independence and autonomy is not compromised in any way.

  1. Metabolic Support UK seeks to generate funding to support its work including building and supporting patient communities, improving patient engagement and advocacy, and improving health outcomes for patients, as well as core costs and overheads.
  2. Any funded collaborative work must benefit patients living with IMDs and their families and support the charity’s strategic objectives.  Metabolic Support UK will not be led by funding into positions which are not in the interests of its patient community.
  3. Metabolic Support UK will be transparent about who it is working with.  Funders of the charity’s activities and projects will have no control or undue influence over the objectives, delivery or outcomes of the work.
  4. Any dissemination of information provided by a partner organisation directly to patients will be at the discretion of Metabolic Support UK after careful review of its suitability.
  5. Metabolic Support UK will never share or sell the details of any individual patients or patient communities.  Aggregated and anonymised feedback from the patient community may be shared with external partners, only if important to convey the patient voice.

We would like to thank our donors and funders for their support.