Policy Partnerships
Partnering for Progress
We collaborate with people with Duchenne, their families, clinicians, researchers and partners across the sector to harness the power of patient advocacy and drive reform where it’s needed most.
As members of the Association of Medical Research Charities (AMRC), the Charity Medicines Access Coalition (CMAC) and the Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum, Duchenne UK also works with like-minded charities and industry to share ideas, shape the policy agenda and engage decision-makers on the barriers slowing progress.
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Association of Medical Research Charities (AMRC)
Our CEO and co-Founder, Emily Reuben OBE serves as a Trustee for the AMRC, which champions, supports and connects UK medical research charities, helping them fund the best research and improve health for everyone. It exists to support its members to be as effective as possible as they find new ways to prevent, diagnose and treat disease. The AMRC also provides a kitemark of quality and a united sector voice on key issues.
Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum
Our CEO was also a founding member of the ABPI’s eight person Patient Advisory Council, and has co-chaired the ABPI’s Patient Organisation Forum.
The ABPI Patient Organisation Forum brings together more than 70 registered patient/health charities to come together with each other and pharmaceutical companies to network and learn, with a shared goal of supporting equitable access to research and innovation for UK patients.
The Forum meets around six to eight times a year to share updates and insight into key topics that are of mutual interest. There are also opportunities to collaborate in different work undertaken by the ABPI throughout the year.
Duchenne UK’s Director of Policy and Communications, Katie Combes, sits of the ABPI Patient Organisation Steering Committee helping to shape the work of the forum.
Charity Medicines Access Coalition
Duchenne UK is also member of the Charity Medicines Access Coalition, which works to find long-term solutions to the challenges that can delay or prevent patient access to medicines.
The coalition is chaired by Myeloma UK and brings together health charities representing millions of people across a range of disease areas.
Working together, CMAC strengthens charity voices in debates around new medicines, focusing our actions and recommendations on:
Identifying
Identifying and supporting ways to improve the adoption of new medicines into the NHS.
Decisions
Acting as an honest broker and critical friend to key decision-makers to remove current and potential barriers that are preventing people accessing newer or better treatment options.
Medicines
Ensuring people with lived experience are at the heart of regulatory and approval processes when decisions are made about the value and affordability of new medicines.
Identifying
Identifying and supporting ways to improve the adoption of new medicines into the NHS.
Decisions
Acting as an honest broker and critical friend to key decision-makers to remove current and potential barriers that are preventing people accessing newer or better treatment options.
To help support discussions around new medicines, the coalition has established relationships with decision-makers across the healthcare system.
We also engage directly with regulators — representing patients in NICE appraisals and Scottish Medicines Consortium assessments, and contributing to Medicines and Healthcare products Regulatory Agency (MHRA) working groups, including advising the MHRA Rare Disease Consortium.
