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.
Signatures (3)
The first 6 Members who have signed to support the motion are the sponsors. The primary sponsor is generally the person who tabled the motion and has responsibility for it. The date shown is when the Member signed the motion.
There are no withdrawn signatures for this motion.