Genetic Alliance UK works with, and accepts sponsorship, grants, fees for service and funding from pharmaceutical companies when this is in the interests of people affected by rare, genetic and undiagnosed conditions.

This document should be read in conjunction with our Ethical Collaboration Policy.  We will also consider requests to support company activities, including patient participation in company activities, provided the request is compliant with the terms of this policy.

In the year 2019-20, Genetic Alliance UK was forced to accept an usually high proportion of income from companies, with the proportion breaking 50% for the first time. This was partially due to a reduction of other sources of income and partially due to extra support from companies to enable Genetic Alliance UK to support its members through the Covid-19 crisis.

From April 2021 forward, Genetic Alliance UK will seek to reduce the total proportion of our annual income received from pharmaceutical and biotechnology companies annually until it reaches 30% of our total annual income.

In working with companies, we will maintain our independence and integrity at all times:

• Before accepting any funds or entering into any working agreement with any company, we will obtain assurances that the company complies with the standards set out in the Association of British Pharmaceutical Industries Code of Practice (2019) – in particular Clause 27 which relates to working with patient groups.
• Before accepting any funds or entering into any working agreement with any company, we will seek the approval of our Board of Trustees.
• Any collaborations and projects must clearly support our mission, our vision, our values, and strategic objectives.
• We will not share information with companies that may give one company a competitive advantage over another.
• We will seek support from more than one company for all activities other than fee for service arrangements.
• Expectations and requirements of both / all parties to collaborations or funding agreements will be recorded in writing.
• Publications or products resultant of industry sponsorship will carry our logo; copyright and any intellectual property generated will remain with the charity.
• No person acting on behalf of Genetic Alliance UK is permitted to accept a benefit from any company.
• Genetic Alliance UK will accept honoraria and reimbursement of expenses for staff when the Chief Executive is satisfied that participation is consistent with the terms of this policy.
• We will continue to seek income from a diversity of sources.

Updated October 2021.