What is DAYBUE? - What You Need to Know About DAYBUE (trofinetide), Part 1

[@fabricioazreis9021]

Hello, I am a lawyer specializing in health law and patient rights. My work is focused on patients with rare diseases, and I am very pleased to inform you that I have successfully secured, here in Brazil, access to DAYBUE for the first patient. It was necessary to go to court to ensure this right, but it is a significant advancement for patients with Rett Syndrome in Brazil as well.

[@dianalidik2097]

Thank you for your information, thank you to all the families, researchers and scientists who were there. We are from Austria, following your work, waiting for new news from ACADIA every day and very much looking forward to Daybue! We celebrate with you! Thanks!❤

[@بنسالم-و5ث]

تحياتي من الجزائر 🇩🇿 شكرا لكل من ساهم في هذا الإنجاز ،نتمنى أن نراه قريبا في الدول الفقيرة.....

[@KhelilSara-wi9ny]

من فضلك اي معلومة عن تواجد هاد الدواء بناي تعاني من متلازمة ريت عمرها 7 سنوات مع السعر ان امكن

[@aylool2257]

@@KhelilSara-wi9ny شفاءها الله وعافاها هل وجدتم الدواء ؟

[@KhelilSara-wi9ny]

اللهم امين للأسف ​لا​ لم نجد حتى الان@@aylool2257

[@gavinmcewen5896]

Presumably family members and caregivers of those participating in these trials will be watching this video. So would firstly like to reiterate a massive thank you for the families that participated in these studies. What incredibly valuable work you have done, and information you have provided, for the global rett family. Secondly would like to ask any that care to ( if you are allowed to) if you could please share your experience regarding the results of the trials/treatment, and what actual improvements you have seen for the rett girls involved. Cheers

[@naviagibode3514]

Thanks for the information

[@Carmenviteri-wu2ee]

Muchísimas Gracias, es una gran noticia escribo desde Ecuador soy madre de una niña Rett

[@melelllan]

When are the next two going to air?

[@gavinmcewen5896]

Is anyone please able to point me to any information regarding the various results for the Rett girls who participated in the trials? Asking as a parent of a Retts girl.

[@ranaadel8123]

+1, And how can we get daybue 😢?

[@gavinmcewen5896]

@@ranaadel8123 I have tried to post a response along with link to an independent evaluation of the trofinetide trial results, but the channel keeps removing my replies. You will a have to draw your own conclusions as to why.

[@Jon-uh8lw]

​@@gavinmcewen5896the latest figures show about 10 percent improve, and those cases it's mostly mild. It's not a wonder drug and sales will drop off as doctors inevitably lose confidence, especially considering the awful side effects. It's hospitalising some kids

[@naviagibode3514]

My child have Retts

[@RaniGupta-wg5xv]

How can I purchase?

[@naviagibode3514]

Can I get it in jamaica

[@sfh2050]

How can I find Trofinetide & Blarcamesine in the Middle East?

[@ranaadel8123]

Tell us how please