Frankie’s Legacy is supporting the first ever Rare Chromosome Disorder Awareness Week in his memory, as Frankie would have had Chromosome 15 Duplication Syndrome if had lived, which meant he would have been severely mentally and physically disabled. This is a very rare chromosome disorder with 1 in 300,000 affected by it, and that was a best guess from the genetics department at the Queen Elizabeth Hospital in Birmingham as so little is known about it and what little information is out there is mainly from the USA!
So I’d like to raise as much awareness as possible of rare chromosome disorders and particularly chromosome 15 duplication syndrome, so If you are a school, hospital or care group and you would like me to come and give a talk and short presentation about rare chromosome disorders including Chromosome 15 Duplication Syndrome during 2-8 June, please get in touch with me via lisa@frankieslegacy.org.uk, I’d be delighted to hear from you.
