Families of children with extremely rare chromosome and gene disorders
Early day motion 264, tabled 30 June 2021 by Owen Thompson (Scottish National Party). Signed by 28 members.
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.
Signatures by party: Scottish National Party 20, Liberal Democrat 2, Alba 1, Conservative 1, DUP 1, Independent 1, Labour 1, Labour/Co-operative 1.