A Charity dedicated to helping children WORLDWIDE suffering the disabling ultra-RARE brain disease; Aromatic Amino Acid Decarboxylase (AADCd) Deficiency
320 Limpsfield Road, Surrey
Joined February 2010
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Excited to co-author a landmark #AADCdeficiency study, presenting 26 new DDC variants. Pushing boundaries in #RareDisease research thanks to the amazing Professor Nenad Blau and all the other contributors. #GeneticResearch #AADCd #ScientificBreakthrough 🧬🔬 Lisa Flint
Honored to co-author these crucial SOPs for #GT surgery & follow-up in #AADCd. Standardisation is key for tracking long-term outcomes. Thanks to @JIMD_Editors for the shoutout to #AADCtrust. #AADCGeneTherapy #RareDisease
Lisa Flint
AADC is one of the few IMD for which gene therapy has moved from the lab into clinical use. Upstazta was approved for use earlier this year and Roubertier et al discuss the necessity of a framework for a quality-assured application of its use.
doi.org/10.1002/jimd.12649
@AADCTRUST
Would’ve enjoyed watching this presentation, especially as a patient organisation who drove this therapy forward and knowing all the benefactors personally! 👏🏻👏🏻👏🏻❤️
Amazing outcomes with Midbrain AAV2-AADC!! @TNeuroSci_Lab @KrystofB #ESGC2022 @SimonWad @HesterChu @Dr_RickPrivo @AADCTRUST chaired by @Dr_RKarda
AADC Research Trust retweeted
👇@Nicole_Paulk Gene therapy for rare disease @RareBeacon @RareEpilepsy @TARareDisease @rarediseaseuk @rarediseasesnet @RareDiseases @AADCTRUST @EJPRareDiseases @camraredisease @RareDiseasesIE @CheckOrphan hosted by @_BSGCT @Dr_RKarda
Delighted to have Dr. @Nicole_Paulk giving a talk for our PPE Series on the 25th of May.
Don’t forget to join us & register on the following link: docs.google.com/forms/d/e/1F…
Literally can’t wait 🙏🏻 for GT to resume in Poland again and more AADCd children have the treatment … Thank you Prof B and #CCF #CureAADCd #GeneTherapy
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Happy to be part of these two beautiful girls journeys to #GeneTherapy ... 🙏🏻 they keep going from strength to strength ❤️ #CureAADC
It's known as Pediatric #Parkinsons-a rare genetic disorder. But #GeneTherapy is changing the lives of two young Canadian girls with this condition ctvnews.ca/health/her-body-w… via @CTVNews @AlexandraMaeJ @AADCTRUST @ColumbusChildrn #RareDiseases
V. good graphics explaining covid and indoor virus spread
The graphics in this article are excellent— this is a huge part of communications that has been missing. If you want to understand how layered interventions reduce #covid19 spread— why masks are indispensable but not always “enough” — read this.
english.elpais.com/society/2…
@WHO @3M @BorisJohnson @NHSuk @CMO_England @GMB @BBCWorld @SkyNews
Does FFP3 help or harm in the fight against #covid19 linkedin.com/posts/lisa-flin…
What a little CHRISTMAS CRACKER Huzaifah is!
Our gorgeous little boy from the UK, in his Spiderman PJs, has now received AAV2-hAADC Gene Therapy Treatment in Poland. A Christmas gift that I am sure Huzaifah... facebook.com/AADCResearchTru…
We are excited to share with you a truly inspirational book... amazon.co.uk/My-Heart-Song-S…
On the 10th DAY OF CHRISTMAS, we opened the door of our advent calendar to find a truly special gift was given…
Our handsome boy, 12 year old Marcus from the UK received AAV2-hAADC Gene Therapy in Poland, a... facebook.com/AADCResearchTru…
We are absolutely THRILLED to share the news with you that Swathi, aged 19, from the USA, has now received AAV2-hAADC Gene Therapy Treatment in Poland. She is the 3rd young ADULT to receive the pioneering brain... facebook.com/8295992541/post…
AADC Research Trust retweeted
😔what use is #zolgensma- that’s why 200 SMA kids in india are in #spinraza trial. Highest regard for Bankiewizc -gene therapy vector #free for #aadc families. They fundraise with @AADCTRUST for their surgery & care in Europe but a fraction compared to #zolgensma
AADC Research Trust retweeted
Please read... What wonderful news! @AADCTRUST @ColumbusFdn @FundaColumbus @NeurosurgeryOSU #genetherapy #RareDisease leighjournal.co.uk/news/1802…
AADC Research Trust retweeted
Hallie has an ultra rare brain condition which has left her essentially locked in her own body. They’re hoping the operation may pave the way for her to walk and talk and stop her daily seizures @GranadaReports itv.com/news/granada/2019-11…
AADC Research Trust retweeted
On @GranadaReports tonight I’m in Poland following 6 year old Hallie as she becomes only the 8th child to undergo experimental brain surgery. Our viewers helped family raise £70,000 for the operation #aadc #genetherapy #hopeforhallie
Tune in to UK ITV News Northwest tonight and tomorrow for a report on Hallie's recent... itv.com/news/granada/2019-11…
We are so excited to share the news with you that beautiful little Hallie has now received AAV2-hAADC Gene Therapy Treatment in Poland! Look at that gorgeous smile!
According to mum Lucy, Hallie is recovering... facebook.com/AADCResearchTru…
Having recently received AAV2-hAADC Gene Therapy Treatment in Poland last month, we are delighted to share the news that Haia is now home again.
According to dad, Haia is recovering well after this major... facebook.com/AADCResearchTru…