H-abc Foundation UK

13/12/2024

We lost one of our H-ABC warriors, please spare a thought for Noah’s amazing family 💔💔 fly high little one

12/04/2024

This is an H-ABC child that desperately needs surgery, please help us share her story! X

Cure for Mayuri started with a simple idea - to make a positive impact on the world by raising awareness and funds for a rare disease that affects me. H-ABC combined with Dystonia and Scoliosis have completely changed my life and limited what I can do. However, I won’t let it defeat my spirit. Thr...

26/10/2023

A great article about one of our amazing H-ABC families 💙

Oxford company working on drug to treat rare brain disease

It took three years for 10-year-old Olly to be diagnosed with a currently incurable brain disease.

19/08/2023

Frankie enjoying his summer holidays! Getting a wheelchair onto a beach is very difficult so being able to borrow a beach wheelchair made his day! 🏖️ 🌊

16/04/2023

https://www.justgiving.com/fundraising/nicola-orr5?utm_source=copyLink&utm_medium=fundraising&utm_content=nicola-orr5&utm_campaign=pfp-share&utm_term=c88fc3cdca984a269e00f9d78530ad8c

Help Nicola Orr raise money to support H-abc Foundation UK

14/04/2023

Great news that Synaptix Bio have raised £13.2m to get us closer trials 👏🏻👏🏻

SynaptixBio secures £13.2m to develop treatment for rare, incurable and deadly disease FeaturedFinance 14th April 2023 Updated: 7 hours ago Share FacebookTwitterWhatsAppLinkedinEmailPrint Credit: Shutterstock.com/ BurAnd SynaptixBio, whose aim is to treat the genetic central nervous system disease ...

28/02/2023

07/02/2023

Great news for the H-ABC community!

A UK biotech firm founded to develop the world’s first treatment for a rare, incurable and deadly disease has secured its first FDA designation.

15/11/2022

A great interview with one of our families and co-founder of SynaptixBio Ltd Dr Michelle Teng 👏🏻👏🏻

Dr Michelle Teng is trying to develop the world's first treatment for TUBB4a leukodystrophy before it is too late for her 12-year-old daughter Sofia.The life...

12/11/2022

Sky news interview with one of our founders Dr Michelle Teng 👏🏻👏🏻

Research suggests there are 1,650 babies worldwide who are born with TUBB4a every year. In the UK, it is thought to affect between 60-90 newborns.