Reverse Rett Maddie is 16 yrs old. She has the longest legs in Leeds. She is brave, beautiful, clever and cheeky. She is a flirty girty. We need #cure #reverserett #Rett #RareDisease Maddie is waiting to show the world what they're missing 🍉🙏🤞💜💙💋

Summer is 14. She loves to go swimming and is fearless where fairground rides are concerned. Summer struggles to eat and is mostly fed through a tube. She cannot speak at all. Summer has #Rettsyndrome #raredisease

📣 Help us reach more families this April by sharing our reel! 📣 SWAN UK is the only dedicated community for UK based families of children aged 0-25 years old who are searching for a genetic diagnosis. #UCD2024 #SyndromeWithoutAName #UndiagnosedGeneticCondition #SWANUK

Charities have been in the news this week because of the £500K Children in Need scam. FundraisingRegulator has urged charities to make sure that all fundraisers are legitimate.

But how does any charity ensure that people out there using their name are genuine? Are smaller charities…

Meet some of our UK children, young people and adults with Rett syndrome by watching our Rare Disease Day film here. #Rettsyndrome #RareDisease #RareDisease Day ed.gr/ehatj

Yesterday Taysha Gene Therapies provided an update to their Rett syndrome program TSHA-102. Here are links to further information including press release, community letter and our key take aways for families. #rettsyndrome #raredisease #genetherapy tinyurl.com/3c5uddn2

Families: Don't be put off by the title of this paper.

Take home message: ECGs are needed to check for Long QT in Rett syndrome and to monitor for intermittent prolonged QT interval which can happen with breathing irregularities.

ed.gr/ehavd

We know from research that patients with Rett syndrome can live into their fifth decade with adequate health care, (Tarquinio et al., 2015) Cancelling these life-saving operations repeatedly is an example of wholly inadequate health care...(2/3)

Kim loves rollercoasters, snakes, minions, swimming, riding, Cubs, people who treat her like any other 10-year-old, chocolate and anything fast and fun. There's so much more she wants to do ❤️ #Rettsyndrome #raredisease #genetherapy

Neurogene has expanded their children's clinical trial of NGN-401 to 16 patients. Read more here. ed.gr/ehaqz #Rettsyndrome #RareDisease #GeneTherapy

Is this the most eventful week ever in the Rett community w/news that Canadian T trial is expanding to include patients 12+ and announcement that @neurogeneinc have dosed 2 female children between the ages of 4-10. Both programs came from research part funded by Reverse…

As #NationalFamilyCaregiversMonth ends, we extend our ongoing support and recognition to those, including Karen, who care for individuals living with #Rettsyndrome . You are not alone. Learn more about our commitment to patients and caregivers: tayshagtx.com/patients-careg…

We are excited to announce that the first two female pediatric patients have been dosed in the Phase 1/2 clinical trial of NGN-401 for the treatment of Rett syndrome. Learn more about NGN-401 and today’s news: bit.ly/4115qPm

What an amazing tribute to beautiful Ciara and her devoted family 💜 thank you #TeamCiara #Rettsyndrome