Specialist nurses bring together families of children with rare neurological disorders

Families from across England came together for a special support day dedicated to children with paediatric relapsing demyelinating disorders (a range of neurological conditions that cause damage to the protective covering that surrounds nerve fibres).

This unique event was a collaborative effort by clinical nurse specialists from Evelina London Children's Hospital and Great Ormond Street Hospital for Children (GOSH) thanks to funding from Evelina London Children's Charity. Evelina London Children's Hospital and GOSH run highly specialist neurology services.

Sarah Crichton, clinical nurse specialist in paediatric neurology at Evelina London, and Stacey Pruett, neurology clinical nurse specialist at GOSH, designed the day in response to feedback from families that they would like to meet others with similar conditions to them. They filled the day with activities designed to provide support and build connections. Attendees had the opportunity to network, share invaluable tips and tricks, seek advice from a panel of experts on demyelinating disorders, and spend time thinking about their journeys so far and their dreams for the future with the Evelina London and GOSH psychology teams.

Sarah said: "Patients with long-term and very rare conditions can feel isolated and family-centred days like this can help them feel that they are not alone. We were overwhelmed with the positive response from patients and their families and hope to use their feedback to improve our support for the future. We were really pleased to be able to offer this day with the support of Evelina London Children's Charity and hope to plan regular events like this."

Among the participants was 17-year-old Giannis Rigas from Milton Keynes, who has a rare neurological disorder called myelin oligodendrocyte glycoprotein (MOG) antibody disease. He said:

It was like a breath of fresh air. Having such a rare condition means I don't normally meet people like me. Meeting other young people with similar conditions and hearing about their lives was reassuring and put my condition into perspective.

Janet Powell, Director of Nursing at Evelina London, said: "Events like these are vital for our young patients and their families. This special day not only provided much-needed support but also fostered a sense of community among families facing similar challenges from across the country, proving that together they are not alone. The success of the event highlights the need for support for families dealing with rare medical conditions, and the profound impact connection and shared experiences can have."

16 families attended the event at Ronald McDonald House Evelina London which also featured a variety of informative stalls from Multiple Sclerosis Trust, Digesting Science and the MOG Project. Researchers from Aston University also had a stall to find out which future research might be most beneficial to families.