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Lucy speaks to Professor Ed Wild, Consultant Neurologist at Queen's Square in London, and Associate Director of UCL Huntingtons Disease Centre. With a short cameo from Jordan at the Huntingtons Disease Association.
"It may be an incurable disease but it's not an untreatable disease"
"people living with HD can be helped in many, many ways but really all that is needed is to be there for them and to be willing to listen to what problems people are having, try to figure out what the cause of those problems might be and then try to figure out ways in which you can deal with the causes of their problems."
Links
Huntington's Disease Association https://www.hda.org.uk/
Huntington's in Mind case studies https://www.hda.org.uk/huntingtonsinmind
Resources for professionals https://www.hda.org.uk/professionals
GEP explains expansion repeat disorders https://www.genomicseducation.hee.nhs.uk/blog/repeat-after-me-what-are-repeat-expansion-disorders/
Prof Ed Wild
https://edwild.com/
https://www.ucl.ac.uk/ion/people/ed-wild
National Genomic Test Directory
If you ever want to see what genetic and genomic testing is available on the NHS and who can request it check this directory out
https://www.england.nhs.uk/publication/national-genomic-test-directories/
Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.
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