Early day motion · EDM 264 · 30 Jun 2021

Families of children with extremely rare chromosome and gene disorders

Tabled by Owen Thompson (Scottish National Party) 28 signatures

The motion

That this House recognises the challenges faced by parents of children with unique or extremely rare chromosome and gene disorders in receiving tailored medical care and locating support groups specific to their situation, as well as in being able to know what to expect or gauge against; commends the work of Unique, whose database helps to track down and pair families with extremely rare chromosome and gene disorders; notes that Unique was founded in 1984 by Edna Knight after two of her four daughters were born with a rare chromosomal disorder; and welcomes significant progress in recent years in helping families overcome diagnostic obstacles through DNA sequencing.

Source: the official Early Day Motions database.