@CureDhdds

Bringing people together to help find a cure for DHDDS gene mutation

 London, England
Joined April 2023
  • Tweets11
  • Following56
  • Followers37
2Media
Only 70 people in the world have this rare gene mutation. Two of them are their kids via @GMA goodmorningamerica.com/welln…

Only 70 people in the world have this rare gene mutation. Two of them are their kids

Mel and Charlie Dixon founded the charity Cure DHDDS to create a brighter future for their kids and fund research for those those affected by rare neurodegenerative diseases like their children.

goodmorningamerica.com
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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-advocac…
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Support #FrancesChangedMyLife this #RareDiseaseDay! Help kids & families facing DHDDS. Donate to @CureDhdds —100% of proceeds go to Frances & CureDHDDSUSA!!! PORTUGAL THE BEER
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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
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#curedhdds #curedhddsusa #camrare #PatientAdvocay #Research
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🧵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
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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 News
@ABC17 Jul 2023
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
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Cure DHDDS retweeted
ABC News
@ABC17 Jul 2023
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
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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
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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!
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