Diana Perry and the Ectodermal Dysplasia Society

Motion Text

That this House recognises the valuable contribution of Cheltenham constituent Diana Perry to the rare disease community; notes the lifelong physical and psychological impacts of ectodermal dysplasia, a group of related disorders affecting the development of hair, skin, teeth, nails and sweat glands, as well as in some cases affecting the skin, eyes, ears, airways and immune system; acknowledges the lack of awareness and support that Diana and her two sons faced following their diagnosis with ectodermal dysplasia; commends the admirable resilience required to transform this experience into a career dedicated to raising awareness of ectodermal dysplasia and supporting families affected; further notes her foundation of the Ectodermal Dysplasia Society in 1996, their achievement of charitable status in 2001 and the establishment of a Rare Disease Collaborative Network for Ectodermal Dysplasia in 2025; celebrates the immeasurable impact of Diana’s work on families across and beyond the United Kingdom; and calls for the Government to take steps to improve awareness of ectodermal dysplasia, fund research into the condition and increase support offered to families before and after diagnosis.