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Building AI Confidence in the Rare Disease Community

Beacon for Rare Diseases logo

About the Organisation

Beacon for Rare Diseases is a UK-based charity that brings together the rare disease community, with patient groups at the heart of its work. Through training and development, they help these often small and volunteer-led groups to form, grow, and strengthen their impact.

What They Needed

With increasing public interest in Generative AI (GenAI), many rare disease patient groups were curious and cautious about how these tools might support their work. For organisations with limited time and resources, there was a clear need for guidance that was practical, ethical, and tailored to their contexts.


Beacon approached me to design and deliver a training offer that would:

  • Introduce GenAI in a clear, accessible way

  • Help participants to use GenAI to support communications and fundraising tasks

  • Build confidence to experiment with AI safely, without pressure or jargon.

What We Did Together

We created a two-part interactive masterclass series for fourteen patient group leaders, with a focus on real-world tasks and small charity workflows. 


Session 1: Fundraising with GenAI

The first session introduced key concepts and explored how GenAI could support longer-form fundraising tasks. Using live demos, practical frameworks and guided activities, participants learned to:

  • Understand GenAI capabilities and limitations

  • Craft better prompts using the PREPARE framework

  • Draft and tailor cases for support and funding proposals using GenAI

  • Use AI to analyse grant guidelines and align applications with funder priorities

  • Develop stronger narratives and case studies from notes


Session 2: Comms and Creativity with GenAI

The second session focused on communications and visual content creation. Participants explored how to:

  • Repurpose fundraising text into different formats (e.g. social media, email, newsletter)

  • Teach GenAI to match their charity’s tone of voice

  • Plan a multiweek campaign using GenAI

  • Use Canva’s AI features to design graphics and flyers

  • Use multimedia tools like image, video and voice generation


I also facilitated a collective reflection on the ethical considerations of AI use in charity settings and how to engage with AI critically and appropriately.

The Impact

Feedback from participants was universally positive. Every attendee reported an increase in confidence using GenAI and that the training helped them feel better equipped to implement AI within their organisation.


The Senior Events Officer at Beacon shared: "Flóra’s deep and nuanced understanding of the rare disease community, paired with her ability to eloquently translate complex concepts, made for an empowering and engaging masterclass. She cultivated a warm, inclusive atmosphere where attendees felt comfortable to ask questions and explore new ideas in a non-judgemental, friendly space. The sessions were thoughtfully crafted and tailored to the unique needs of our community, equipping attendees with practical skills to implement AI tools safely and confidently within their organisations."

Thinking About a Tailored Training Offer?

If your team or network needs practical, thoughtful training on digital tools or inclusive practice, I’d love to help. Let’s design something that fits your people, your purpose and your pace.

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