Dravet Syndrome UK, which supports people impacted by a rare form of epilepsy, has named Sarah Pearce as its next director.

She joins the charity, which supports those impacted by Dravet Syndrome, a form of epilepsy that occurs in around one in 15,000 births, from Faversham Counselling Service, where she was managing director.

She replaces Claire Eldred, who has been interim director for the last year and returns to her role as the charity’s head of marketing and communications.

The charity’s last permanent director was Helen Evans who left in 2021.

Dravet Syndrome is a rare, lift limiting form of epilepsy which can cause disabilities and conditions including autism and difficulties with speech and mobility.

“This is a fantastic time to be joining Dravet Syndrome UK,” said Pearce, who has also held roles at Mencap and Epilepsy Society.

“It is taking the lead for families living with Dravet Syndrome and aiming to ensure that they are at the core of the charity’s work, whether that is supporting families, working with health and social care professionals, research or enabling self-advocacy for those families.

“I will be bringing my experience from previous roles with Mencap and the Epilepsy Society and my passion and commitment to those wanting their voices heard.”

The charity’s chair Galia Wilson added: “Dravet Syndrome is a devastating diagnosis and affected families face many challenges. Last year, we launched a five-year strategy, setting out a roadmap to address these needs.

“With her wealth of experience in the sector and her passion for supporting families with complex needs, Sarah will help us to achieve our goals to reach and empower more families, deliver research that puts family needs first, and improve awareness and understanding amongst professionals.”

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