About this event

  • Date and time Mon 25 Sep 2023 from 5:00pm to 6:00pm
  • Location Online
  • Organised by Medical Genetics

This webinar continues a series of webinars that highlights the lived experiences around genetic conditions. Many patients, particularly in inherited disease are experts in their condition and we need to utilise their expert knowledge to improve our services and research and development strategies. 

This meeting focuses on Duchenne UK whose strategy of bringing families, clinicians, researchers and regulatory bodies together has made a difference to the day to day experience of families touched by Duchenne Muscular Dystrophy.

This meeting aims to provide attendees with an opportunity to learn about the importance of effective patient advocacy, to raise awareness of the role that patients can play at all stages of research and development, and to highlight the need to develop expert clinical networks to optimise access to clinical trials.

By attending this meeting, you will:

  • Learn how to effectively involve your patients in service improvement
  • Improve your ability to involve your patients in the development of research strategies
  • Highlight how to engage other stakeholders to bring about change  


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Key speakers

Emily Reuben

Mrs Emily Reuben OBE

Founder and CEO of Duchenne UK

Speaker's biography

Emily Reuben OBE is the Founder and CEO of Duchenne UK.


Before founding the charity, Emily had a successful career as a news reporter and anchor for Channel 4 News and CNN International. In 2012, she received the devastating news that her then 3-year-old son had Duchenne Muscular Dystrophy (DMD), a progressive and life-limiting muscle-wasting disease. Refusing to accept that there was no effective treatment available, Emily set up the Duchenne Children’s Trust with the goal of funding research to change the future for her son and all children diagnosed with DMD. The charity joined forces with Joining Jack and is now Duchenne UK.

In just over ten years, Duchenne UK has invested £20 million into accelerating research and clinical trials, and become an essential voice for the DMD patient community. Emily has represented DMD patients in meetings at the European Medicines Agency (EMA), the Food and Drug Administration (FDA) and the National Institute for Health and Care Excellence (NICE).


In 2023 Emily was recognised in His Majesty The King’s Birthday Honours list and awarded an OBE for her services to charity and to people with DMD. In 2021, she was elected to sit on the Association of British Pharmaceutical Industry’s (ABPI) Patient Advisory Council and the Steering Group for the ABPI’s Patient Organisation Forum. Emily is also a member of the MHRA’s Patient Group Consultative Forum, as well as the Patient Reference Group for their new Innovative Licensing and Access Pathway (ILAP). In 2017, she was honoured with a Points of Light award by the Office of the Prime Minister.

Ms Fleur Chandler

Head of Market Access, Sanofi UK and Ireland

Speaker's biography

Ms Fleur Chandler is Head of Market Access at Sanofi UK and Ireland. She is a health economist with over thirty years’ experience in pharma, with particular expertise in Health Technology Assessment, leading both global and UK teams in global pharmaceutical companies.


Fleur is also a parent of a teenager with Duchenne Muscular Dystrophy (DMD) and sits on the parent board of the patient organisation, Duchenne UK. Fleur conceptualised and leads Project HERCULES, a collaborative patient organisation led initiative across industry, patients, clinicians, academics and decision makers to generate a gold standard disease level evidence base in Duchenne.


View the programme

Welcome and introduction

Dr Shwetha Ramachandrappa, President, Medical Genetics Section, Royal Society of Medicine

The innovative role that patient organisations can play in dealing with rare disease

Mrs Emily Reuben, Co-Founder and CEO, Duchenne UK and Ms Fleur Chandler, Head of Market Access, Sanofi UK and Ireland

Question and answers
Closing remarks
Close of meeting



Registration for this webinar will close 1 hour prior to the start time. You will receive the webinar link 1 hour before the meeting. Late registrations will not be accepted.

Webinar recordings will be available for registered delegates up to 60 days after the live webinar, via Zoom. The link will be sent 24 hours after the webinar takes place.

This webinar will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels.

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