Our ambassador annual meet up!
Last month was the Medics for Rare Disease Ambassador’s annual in-person meet up. Ambassadors came together from across the UK to share experiences and attend a number of workshops. Some had healthcare and clinical backgrounds others had first-hand experience of living with, or caring for someone with, a rare condition.
Face-to-Face Connection
The day started with introductions. People shared their insights and their motivations for advocating in the rare space. Although many of us had already connected virtually, there was something powerful about coming together in a shared space. It was a reminder that there is no substitute for time spent together in person.
A Day of Insight and Inspiration
The day consisted of three sessions. The first was a talk by author and rare disease advocate, Dan Jeffries, who shared his personal journey of being diagnosed with not one, but two ultra-rare conditions. He spoke candidly about the struggles many people face in getting a diagnosis for rare condition. But he also reminded us that sharing our personal health journeys openly can mean hope for others and that sometimes a sense of humour can be a survival tool in the face of adversity.
The second talk was on Metabolic UK’s Living Well campaign, which addresses what it really means to live well with a rare condition from everyday practical adjustments to understanding legal and employment rights when living with a disability. The talk was a reminder that progress doesn’t just come from medicine but from the systems that support people to live fully.
The final session was by Costello Medical on how to publish rare research. This provided a comprehensive look at the publication process from selecting a journal to structuring a research paper. The session provided clarity around a process often viewed as complicated and intimating. It gave confidence to the group that publishing their own rare research is possible.
Food for Thought
As well listening to interesting and thought provoking talks, we were treated to a fabulous lunch. It’s true,
nothing brings people together quite like good food. Over plates of lunch, we exchanged personal stories and
professional experiences and also our hopes for the future for the rare disease community. It was an excellent
opportunity to continue conversations informally and get to know each other better.
The gathering ended with a renewed sense of solidarity and motivation. It served as a reminder of the power
of collaboration between lived experience, clinical expertise and pioneering research. But importantly, that
none of this would be possible without hope and human connection.
