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This year The AADC Research Trust celebrates 15 YEARS of patient advocacy, raising global awareness and funding critical disease reasearch. 

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Being an ultra RARE disease has many challenges, one being the ability to have your voice heard amongst the many more well known causes. AADCd Awareness Week is our opportunity, as a group, to raise our profile to a global audience.

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Our Awareness Week gives us the opportunity to raise essential funds in order to maintain the charity’s ability to support our amazing AADCd children & families.

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All funds raised enable us to continue advocating for our ultra RARE disease.

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They enable us to continue driving research, to continue pushing for better treatment strategies & to continue challenging the medical & scientific community to reach our ultimate goal of finding a CURE.

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As part of our annual AADC Awareness Week Campaign 2021, The Trust hosted five AADCd Family Workshops.

 

Each workshop consisted of a leading AADCd expert, discussing key topics concerning this devastating disease. Global experts shared incredibly informative presentations, followed by Q&A sessions where families were able to put forward their questions.

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• Workshop 1; AAV2-hAADC Gene Therapy in Poland and USA

       Professor Krystof Bankiewicz and Dr Toni Pearson

• Workshop 2; PS128 Study; The Possible Benefits on Children with AADCd 

       Dr Wang-Tso Lee

• Workshop 3; A Clinical Presentation of AADCd; Understanding the Symptoms and Treatments

       Dr Roser Pons 

• Workshop 4; Understanding Phenotype Vs Genotype in AADCd

       Dr Mita Bertoldi  

• Workshop 5; Understanding the Biochemistry in AADCd

       Professor Simon Heales.

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The workshops were a huge success! Attendance was high & families were given the rare opportunity to engage with our AADCd experts.

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To view the workshop videos and transcripts please go to the AADCd Family Workshop homepage...