A-T Foundation

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A Voluntary Organization for Children affected from a Genetic Medical Condition 'Ataxia Telangiectasia' a Fast-progressive Incurable Neuro-degenerative Rare Disease A Voluntary Organization for Children affected from a Genetic Medical Condition named 'Ataxia Telangiectasia' a Fast-progressive Incurable Neuro-degenerative Rare Disease.

Dear AT Community,There was some fantastic news over the weekend: the US Food and Drug Administration (FDA) approved Int...
21/09/2026

Dear AT Community,

There was some fantastic news over the weekend: the US Food and Drug Administration (FDA) approved IntraBio’s drug AQNEURSA® (levacetylleucine) for the treatment of ataxia in children and adults diagnosed with ataxia telangiectasia (AT) in America. This is the first treatment that has been approved, ever, for AT in the world and is cause for celebration!

It has taken a long time to reach this stage and we are so grateful to IntraBio for their perseverance with this treatment, and to all the families who have taken part in the clinical trials, the medical teams and scientists around the world – you have all played a massive part in making this happen!

AQNEURSA® is not yet approved in Europe or the UK, but this announcement marks a very significant step towards this becoming a reality here too. As soon as we have more news with progress in the UK we will share this with you. In the meantime, more can be read about the treatment here: IntraBio Announces U.S. FDA Approval of AQNEURSA® (levacetylleucine) for Ataxia-Telangiectasia

https://www.businesswire.com/news/home/20260918198606/en/IntraBio-Announces-U.S.-FDA-Approval-of-AQNEURSA-levacetylleucine-for-Ataxia-Telangiectasia?fbclid=IwY2xjawUdyABwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMUJndnF5V0s4c3AxUmRMb09zcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeuuorCWj-MxJLH_cXWcHo6qoUkarBWUPwFzTD8YbF6jMJF0LPgqKRCvIfCSY_aem_zyBiKdsXZy3BHAZmF-VV-A

is where it’s AT. Ataxia-Telangiectasia A-T Society A-T CureTeam Action for A-T BrAshA-T Ataxia-Telangiectasia

Best wishes

Susie Norbury
Director of Fundraising & Operations

We Srivastwa Manoj and the Team A-T Foundation support “Rare Disease Day ~ 2026”28/02/2026 May your efforts become succe...
28/02/2026

We Srivastwa Manoj and the Team A-T Foundation support “Rare Disease Day ~ 2026”

28/02/2026

May your efforts become successful in bringing smile to many children 🌎.

28/02/2026

🌈 Rare Disease Day 2026

Together, we shine a light on Ataxia‑Telangiectasia

Today, on Rare Disease Day, we stand with every child, young person, and family affected by Ataxia‑Telangiectasia (A‑T) — a devastating and complex condition that remains far too rare to be ignored.

A‑T steals abilities most of us take for granted. But it never diminishes courage, determination, or the power of community. At Action for A‑T, we’re driven by one mission: to fund world‑leading research that brings hope, answers, and ultimately, treatments for children living with A‑T.

💙 Every breakthrough starts with awareness.
💚 Every step forward begins with support.
💜 Every child with A‑T deserves a future full of possibility.

Join us today by sharing our message, learning about A‑T, or supporting research that can change lives.

Rare is many. Rare is strong. Rare is proud.


Ataxia-Telangiectasia A-T Society BrAshA-T Ataxia-Telangiectasia aefat Ataxia-Telangiectasia A-T Children's Project Associazione Nazionale Atassia Telangiectasia - ODV ATEurope Ataxie Télangiectasie Ataksi Telenjiektazi (A-T) TÜRKİYE Hope4AT Ataxias ARG AT Argentina Mollie's Miracle - Living with Ataxia Telangiectasia A-T Foundation Emilia's Endeavour

यदि ये ख़बर पक्की है बहुत हीं अच्छी ख़बर है। यदि किसी के ज़्यादा जानकारी हो तो कृपया हमें ataxiaindia@gmail.com पर लिखने...
01/09/2025

यदि ये ख़बर पक्की है बहुत हीं अच्छी ख़बर है। यदि किसी के ज़्यादा जानकारी हो तो कृपया हमें [email protected] पर लिखने का अनुग्रह करें।

https://www.facebook.com/61552316983060/posts/122250022058077232/?mibextid=rS40aB7S9Ucbxw6v

विज्ञान का चमत्कार – जीन थेरेपी से जन्मजात बहरापन दूर कर सुनने की शक्ति वापस लौटी।

Today is International Day of Persons with Disabilities! 🎉Join us as we celebrate the International Day of Persons with ...
03/12/2024

Today is International Day of Persons with Disabilities! 🎉

Join us as we celebrate the International Day of Persons with Disabilities together with athletes from the Paralympic Movement! This year, we share how sports have the power to transform people’s lives. And as we look forward to the winter spectacle, we took a moment to catch up with two French stars about their incredible experiences at Paris 2024.

A-T Foundation Supports Ataxia-Telangiectasia A-T Society Ataxia-Telangiectasia A-T Children's Project BrAshA-T Ataxia-T...
03/08/2024

A-T Foundation Supports Ataxia-Telangiectasia A-T Society Ataxia-Telangiectasia A-T Children's Project BrAshA-T Ataxia-Telangiectasia aefat ATEurope Ataxie Télangiectasie AT-Argentina National Ataxia Foundation National Organization for Rare Disorders, Inc. (NORD) Rare Disease Day US Unique - Rare Chromosome Disorder Support Group Cambridge Rare Disease Network Rare Ireland Rare Diseases International Rare Disease Day Ataxia UK Action for A-T Pamela Skyberg Digby Srivastwa Manoj

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