Cure DHDDS

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

[Cure DHDDS @CureDhdds]

Only 70 people in the world have this rare gene mutation. Two of them are their kids via @GMA https://t.co/mIm3aRAp9F

[Cure DHDDS @CureDhdds]

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.
https://t.co/EnEQ3SYSGx

[Portugal. The Man PT/BR FAAANS @FansLovePTM]

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

PORTUGAL THE BEER

[Cure DHDDS @CureDhdds]

#curedhdds #curedhddsusa #camrare #PatientAdvocay #Research

[Cure DHDDS @CureDhdds]

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.
https://t.co/Cm0HwUIXJu
#RareDiseases

[Krzysztof Potempa @BRAINCURES]

🧵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

[Genetic Alliance UK @GeneticAll_UK]

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!

[Cure DHDDS @CureDhdds]

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

[ABC News @ABC]

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. https://t.co/02jvtTM51B

[Steph's Packed Lunch @PackedLunchC4]

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: https://t.co/gFsBrmi649

@StephLunch | @CureDhdds | #StephsPackedLunch

[NHS South East Genomic Medicine Service @SEgenomics]

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!