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XLH UK policy on working with pharmaceutical and medical device companies

The purpose of this policy is to provide clear principles and guidance about how XLH UK works with pharmaceutical and medical device companies. Such partnerships enable us to achieve the charity’s mission without compromising our integrity.  This policy exists to ensure our work with pharmaceutical and medical device firms does not affect our ability to offer independent and unbiased patient information, or influence our campaigning, research or fundraising activities.

XLH UK recognises that working with pharmaceutical companies that manufacture and market drugs and treatments gives XLH UK important knowledge and expertise.  Such companies are also willing to sponsor and fund certain activities undertaken by XLH UK. However, pharmaceutical companies and medical device companies are not charitable organisations and XLH UK takes particular care in how it works with them.

Below are the principles which XLH UK will adhere to when entering into partnerships with pharmaceutical and medical device companies and ensures that all partnerships are consistent with our organisational aims.

These are as follows:

  • All partnerships will be based on the principles of integrity and openness and will bring benefit to XLH UK through funding or through supporting XLH UK to achieve its mission. XLH UK will not accept support for activities which lie outside our objectives.
  • All partnerships between pharmaceutical and medical device companies and XLH UK will be subject to a risk assessment and approval by the Board of Trustees.
  • Any partnership entered into will not compromise the independent status of XLH UK.
  • We will ensure that our editorial independence is maintained so that we are free to comment both positively and negatively about pharmaceutical and medical device companies and their products.
  • XLH UK welcomes opportunities to raise funds and awareness through cause related marketing and sponsorship. However, XLH UK will not directly endorse any third party, its products or services.
  • XLH UK will work with members of the pharmaceutical industry to share knowledge and expertise. This may involve the participation in pharmaceutical industry organised events such as: private or public meetings; training events; advisory board meetings; and market research events. No commercial partnership will be entered into with a company whose product or service is considered to be detrimental to people living with x-linked hypophosphataemia or related disorders, or any product or service with unsupported claims of positive benefits to those with x-linked hypophosphataemia or related disorders. All partnerships with products and services with specific links to x-linked hypophosphataemia or related disorders will require approval by the Board of Trustees.
  • Partnerships with pharmaceutical companies will not compromise XLH UK’s independent status and will comply with the ABPI Code of Practice for the Pharmaceutical Industry.
  • XLH UK will not undertake any joint work with, or accept funding from a pharmaceutical company where promotion of a specific drug is required or demanded by the company (either explicitly or implicitly).

There may be occasions where we will campaign for equitable access to a treatment. Under no circumstances will we accept funding from pharmaceutical companies to support campaigning activity for access to specific treatments. In the instance of campaigning for access to a drug made by a company that XLH UK has received funding from currently or in the past for separate projects, we will ensure that all funding is declared as requested on official documentation provided to regulators, and make clear that funding for separate projects has no impact on whether we campaign for access to a specific treatment or not.

Any funding or joint activity must be compliant with the conditions of the ABPI Code of Practice for the Pharmaceutical Industry. Where a company is not a member of the ABPI we will require written assurances that any partnership work or support will be conducted to the ABPI Code of Practice.

‘XLH UK policy on working with pharmaceutical and medical device companies’ was first published in October 2019 and reviewed in October 2022.