Join our webinar series to explore the rare disease research funding landscape and discover how patient groups can make a real impact.
Update: Part 2 is now up! Please scroll down to register.
With 80% of rare conditions still lacking approved treatments, accelerating research progress is a top priority for many patient organisations.
Funding is essential to drive these efforts, and with funders now prioritisng the use of real-world evidence in applications, patient groups have an even greater opportunity to make a meaningful impact.
Navigating the complexities of research funding can be challenging. That’s why we’ve developed this two-part webinar series to explore the current funding landscape and show how patient groups can add significant value to research applications.
What to expect from the series
Part one: Navigating the funding landscape for rare disease research
Thursday 12th December, 11:00 – 12:30 GMT
The first session will offer an overview of the research funding environment, exploring the types of research projects patient groups can support and who the key funders are.
In this session, you’ll learn about:
- The types of research you could support, beyond just clinical trials.
- The different funding streams available, from government bodies to commercial funding from industry.
- The opportunities and limitations associated with each funding stream.
Meet our session one speaker!
Toni Mathieson has been the CEO of Niemann-Pick UK (NPUK) since 2005, bringing personal insight as a parent of three children with Niemann-Pick type C, and a professional background in marketing and HR.
With 20 years of patient advocacy experience, Toni has worked with 28 patient groups across 21 countries, is a founding Director of the International Niemann-Pick Disease Registry, chair of the UK Lysosomal Storage Disorders Patient Collaborative, and a Patient Public Voice member with NHS England.
Part two: Influencing funding success: How patient groups shape applications
Thursday 23rd January 2025, 11:00 – 12:30 GMT
This session will focus on how patient groups can enhance the impact of funding applications. With more funders prioritising patient involvement and real-world evidence, we’ll explore how your group can collaborate with researchers to make stronger, more competitive applications.
In this session, you’ll learn:
- How patient insights can diversify academic ideas and strengthen grant applications.
- Practical ways to support researchers with patient engagement requirements.
- What steps you can take now to ensure your group is ready to contribute meaningfully to research applications.
Who is this webinar for?
This webinar series will be particularly useful for rare disease patient groups already working with academic teams or research project leads.
Patient groups wanting to enhance their understanding of the funding landscape are welcome to join too!
Please note: the ticket window may take a few seconds to load. If you have difficulties, you can register directly here.
Please note: the ticket window may take a few seconds to load. If you experience difficulties, you can register directly here.
