For many families living with rare connective tissue diseases, everyday life can feel isolating.

Conditions like Juvenile Dermatomyositis (JDM), Lupus and related disorders are complex, lifelong and often misunderstood. For children and young people growing up with these conditions, and for their parents navigating uncertainty, opportunities to connect with others who truly understand are rare.

Thanks to the fundraising efforts of Becky Pritchard, Leeds Hospitals Charity funded a Family Educational Support Day in Leeds with the purpose of bringing families together, providing trusted clinical insight, and building a lasting sense of community across Yorkshire.

Held at The CarriageWorks in Leeds, the event welcomed 14 families from across the region, with children aged between 4 and 17.

From the moment families arrived, the focus was on creating a warm, inclusive space. Over lunch, parents and children began talking, many for the first time, with others who shared similar experiences.

For children, an interactive entertainer helped break the ice, bringing laughter and easing nerves. What followed was a day carefully designed to support both emotional wellbeing and practical understanding.

After the initial welcome, families split into tailored sessions. Children took part in creative, inclusive activities, from crafting to games, adapted to suit different ages, energy levels and physical needs. These moments weren’t just about fun, they helped young people connect in ways that felt natural and pressure-free.

Meanwhile, parents and carers joined expert-led sessions covering:

• Disease management and the latest research
• Practical advice from rheumatology nurses
• Emotional wellbeing and resilience
• Real-life experiences from people living with these conditions

A particularly powerful element of the day was the chance to ask questions directly to specialists and lived-experience speakers. For many families, this was the first time they had openly discussed topics such as long-term prognosis, education and transition into adulthood in a supportive, shared setting.

Parents spoke about the relief of meeting others who “just understood,” without the need for explanation. Children who arrived feeling shy or unsure began to open up, forming friendships through shared activities.

One young person, initially too shy to speak, left the day confidently sharing her artwork and teaching others new techniques.

Tara Connelly from Bright Futures UK, who supported the children’s activities, reflected:

“The event clearly created a lot of smiles and positive connections. It helped connect the families who attended, seemingly building a stronger sense of belonging.”

The event has laid the foundations for a growing regional support network, giving families the opportunity to stay connected, share experiences, and support one another long after the event has ended.

Plans are already in place to establish:

• Ongoing peer-support groups
• Regular updates and shared resources
• Future family events and educational days

By bringing together clinical expertise, lived experience and community support, the Family Educational Support Day has shown what’s possible when families are given the space to come together.