New RareChat!

New RareChat!

Connecting beyond borders: International outreach

We’re excited to announce our next RareChat focusing on international outreach!

This will be an opportunity for rare disease patient leaders to come in and talk about their experiences, obstacles, and explore effective strategies for connecting with both patients and patient groups on a global scale.


?? 4th December, 11-12:30pm

?? Online (Zoom)


Join us to discuss:

  • How?other patient groups are successfully extending their reach internationally
  • Practical strategies?for connecting with patients and organisations beyond national borders
  • How to overcome cultural, geographical and logistical?challenges?
  • Real-life examples?of international outreach efforts, advice and lessons learnt?


Sign up here.


Register now!

Introduction to charity finances

Get your finances ready for the new year and join our upcoming workshop!


?? 27th, 28th and 29th November, 10:30am - 12:30pm GMT

?? Online (Zoom)


This online session, led by Caron Bradshaw, OBE, an expert from the Charity Finance Group, is designed for rare disease leaders without a background in finance.


This workshop offers:

?? Practical financial skills: Gain tips and resources you can apply immediately, empowering you to manage your charity’s finances with confidence.

?? Expert guidance: Learn from an experienced trainer who understands the unique financial challenges non-profits face.

?? Increased impact: With a solid financial foundation, you’ll be free to focus on what matters most—your advocacy work!


Don’t miss out! Register today ??


NEW webinar series!

Empowering patients in rare disease research funding

Register for part one our new webinar series! Discover insights into the rare disease research funding landscape and how patient groups can make a real impact.


?? 12th December, 11:00am-12:30pm GMT

?? Online (Zoom)


In this first session, we'll provide an overview of the research funding environment, discussing the types of research projects patient groups can support and identifying key funders in the field.


What will you learn?

  • Different types of research you can support, beyond clinical trials.
  • A breakdown of various funding streams, including government bodies and industry.
  • The opportunities and limitations tied to each funding stream.


Sign up!


Also coming up…

Secure your spot at #iDR25

?? 7th - 8th May 2025

?? Amsterdam

Join global experts to explore how and why drug repurposing is transforming the development of new treatments and shaping future medicine.

This event unites voices from research and patient communities, policymakers, funders, regulators, and industry leaders to explore the latest advancements and opportunities in drug repurposing.

We appreciate there may be a financial-barrier to small patient groups and patients in attending this conference. We are able to offer up to 200 euros to patient groups to support travel and accommodation. For more information, please get in touch with [email protected].

Get your tickets!


Call for poster abstracts

This conference will feature an engaging poster session, offering an opportunity for you to present your work, experiences and stories!

Whether you’re a patient group representative, researcher or industry professional, you’ll get the chance to showcase your poster to professionals and thought leaders in the drug repurposing field.

Find out more.




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