2025 so far…
It’s hard to believe we’re already halfway through 2025 and what a year it’s been for SOFT UK. Possibly our busiest yet!
As with any year of growth, it’s come with bittersweet moments. We've said goodbye to some much-loved colleagues and welcomed new team members into the SOFT UK family.
Our Biggest Family Day Yet
In May, we were thrilled to host our largest Family Day to date, welcoming over 60 people from across the UK (and France!). Family days are at the heart of what we do, offering understanding and a safe space for families affected by trisomy 13 and 18. Please keep your eyes peeled for our upcoming regional family days.
Launching: Changing the Narrative
In June, we launched our new campaign, Changing the Narrative, a powerful movement to challenge outdated and harmful language around trisomy diagnoses. Terms like "incompatible with life" do not reflect the reality of many families' experiences. We believe in compassionate, accurate language that recognises trisomy conditions can be
life-limiting, not life-denying. This campaign aims to empower families, educate professionals, and shift assumptions, and we’re just getting started.
Championing Trisomy in the Rare Disease Space
Our central team have also been out and about, attending key events and building valuable
connections in the rare disease community. Paige travelled to Cambridge to attend Beacon’s Rare Disease Showcase, and shared this reflection from the day:
"I had the privilege of travelling to Cambridge to attend Beacon’s Rare Disease Showcase, an
evening filled with a shared passion for supporting those on rare journeys. Beacon’s mission is simple yet powerful: ensuring that no one faces their rare journey alone. Their vision of a united rare disease community, with patient groups at its heart, aligns with our own values at SOFT UK.
Among many inspiring speakers, Lindsay Randall from SLC6A1 Connect and Arthur’s Quest really stood out. Hearing about their work, their challenges, and their creativity in raising awareness felt especially relatable. Representing SOFT UK in this space is always a privilege. Events like this give us the chance to spotlight trisomy 13 and 18, conditions too often missing from the wider rare disease conversation. Through collaboration, shared learning, and awareness, we can better serve and support our community.”
