Are you looking to engage in research but don’t know where to start?
With limited awareness of rare conditions in academia, knowing where to start, initiating conversations, and building lasting relationships with the right research teams can be challenging.
Why is partnering with academics important?
Collaboration between patient groups and academics is key to speeding up treatments, improving care, and keeping research patient-centric.
Academics bring both scientific expertise and the necessary infrastructure to conduct studies, while patient groups help by:
- Contributing to turning scientific discoveries into real benefits applicable to patients
- Leveraging their established networks to help recruit patients while prioritising patient needs in the research
- Strengthening research proposals with real-world data to enhance funding opportunities
What will you learn in this webinar?
- How academic research works and the structures that shape it
- Where to find researchers working on your condition and how to connect with them
- Practical ways to boost the appeal of your patient group to researchers
- A real-world example of a patient group successfully partnering with academics and getting involved in research
Meet the speakers
Mel set up the charity Cure DHDDS after finding out that two of her three children carried an ultra-rare and newly discovered DHDDS genetic mutation which causes a progressive metabolic disorder.
Mel soon realised that there was limited support and research available on the condition, so with her husband Charlie Dixon founded the charity Cure DHDDS.
Mel now works full time for this charity, supporting families and driving research in the hope of expediting a treatment. Mel is also a member of the Genomics England Participant Panel, CDG UK, The LSD collaborative and UKRET (UK Rare Epilepsy’s Together).
Megan joined Beacon in January 2025 as our Senior Scientific Projects Officer. Before joining Beacon, she completed her Masters by Research and PhD at the University of Birmingham, studying Human Papillomavirus (HPV) driven cancers.
Megan then went on to work at the Francis Crick Institute as a postdoctoral researcher, carrying out lab based research whilst also getting involved in public engagement and outreach activities. With over 8 years of research experience, Megan has worked with a range of clinical and non-clinical academics and researchers within universities and biomedical research institutes.
