Cure DHDDS

Only 70 people in the world have this rare gene mutation. Two of them are their kids via @GMA goodmorningamerica.com/wellness/video…

Mel is looking forward to being part of the Global Genes Rare Advocacy Exchange Patient Summit with fellow DHDDS advocate and Portugal. The Man singer Zoe Manville, and host of The Special Needs Mom Podcast Kara Ryska. March 10th at 6pm GMT. globalgenes.org/rare-advocacy-…

Support #FrancesChangedMyLife this #RareDiseaseDay! Help kids & families facing DHDDS. Donate to @CureDhdds —100% of proceeds go to Frances & CureDHDDSUSA!!! PORTUGAL THE BEER

#curedhdds #curedhddsusa #camrare #PatientAdvocay #Research

On 21st September 2023, Cure DHDDS hosted its first Virtual Conference, which brought key scientists within DHDDS and NUS1 research together. Read the summary report to find out why we are at a pivotal moment in #DHDDS and #NUS1 research. curedhdds.org/sitepad-data/u… #RareDiseases

🧵Rare Neurology-CNS Partnering Event by @ronijort’s Aspire Biosciences Cavernoma Alliance UK @cavernomauk @CCHSNetwork Cure DHDDS @CureDhdds DHX30 United Kabuki syndrome @kabukisyndrome Neuroacanthocytosis @NA_Advocacy Ring chromosome 20 syndrome @Ring20UK SLC6A1 @AmyandFriends

Fantastic to see our new members, @CureDhdds on our feed this morning via @ABC raising awareness of DHDDS gene mutation and shining a spotlight on the genetic and rare community!

@ABC Thank you so much @ABC for helping to raise awareness of DHDDS

Tom and Rosie Dixon are two of only 70 people in the world diagnosed with a rare genetic mutation with effects similar to Parkinson's disease and for which no treatment exists. Their parents are fighting back. trib.al/uWvOfP3

Doc Martin and EastEnders actor Joe Absolom joined us to talk about his niece and nephew’s rare genetic condition and told us why more research needs to be done. For more information go to: curedhdds.org @StephLunch | @CureDhdds | #StephsPackedLunch

This #Rarechromoday, we want to share the story of the Dixon family They've recently discovered that two of their children have a rare #DHDDS gene mutation after having #WholeGenomeSequencing. They have set up @CureDhdds to reach out to other families like them. Please share!