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Closed 28/08/2019
The AADC Research Trust

PLEASE can you donate #aRAREgift of JUST £2 or more!

The AADC Trust is struggling and may not financially survive the next 6 months. Please help us continue with our important work to raise awareness and provide AADCd children a chance of life #aRAREgift
raised of £18,000 target
by 121 supporters
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Closed on 28/08/2019
RCN 1114367

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Every day between Valentines Day (14th Feb) and Rare Disease Day (28th Feb) we will share pages from our children's AADC story book with you highlighting in the simplest of ways how AADCd affects our community.

We desperately need your help. Please share far and wide and donate JUST £2 or more!

Visit www.aadcresearch.org for more about our ultra-RARE disease


1. Over 7000 RARE Diseases in the World with 350 million sufferers

2. 3 out of 10 children with a RARE disease wont see their 5th birthday

3. 1 in every 2 diagnosed with a RARE disease is a child

About our deadly disease; Aromatic Amino Acid Decarboxylase deficiency (AADCd)

1. In 2018 we lost 10 children/young adults to the ULTRA-RARE disease Aromatic Amino Acid Decarboxylase deficiency (AADCd)

2. = to 7% of the World AADCd population, spanning 30 countries

3. Before 2018 we lost at least 3 children each year to AADCd

AADC Trust History...

Since 2006 we've raised £1.5 million for AADCd

In 2009 the first pioneering Brain Delivered AADC Gene Therapy was performed on an AADC deficient child

In 2018 more than 30 AADC deficient children have undergone 2 variations of pioneering Brain Delivered AADC Gene Therapy with life-changing results

In 2019 we hosted and funded our 1st AADC medical, scientific and family conference in China

In 2018 we hosted and funded our 4th AADC International medical, scientific and family 2-day conference

From 2006-2011 we hosted and funded 5 International medical meetings

In 2017 we published the 1st Consensus Guidelines for the Diagnosis and Treatment of AADCd

AADC Consensus Guidelines

In 2019 we published a Chinese version Consensus Guidelines for the Diagnosis and Treatment of AADCd

AADC Consensus Guidelines (Chinese)

In 2010 the 1st AADCd database was developed called the Jakedb

In 2017 a more extensive AADCd database was developed replacing the Jakedb with the iNTD

iNTD AADC Database

In 2011 we first introduce the idea of 3OMD as a biomarker suitable for New-born Screening

In 2018 a Worldwide AADCd Natural History Study was carried out

In 2018 we created an AADC dopaminergic 'induced Pluripotent Stem Cell' (iPSC) model

AADC iPSC Research

In 2015 we developed & published an AADC Disease Animation in English,

By 2018 a further 5 more languages have been published with 2 more almost complete & many in the pipeline

AADC Disease Animation

In 2013 we published our online AADCd sibling story book in 3 languages

In 2014 we printed a paper version of our AADCd sibling story book

Since 2006- to date the AADC Trust has been responsible for funding multiple research studies around the world to improve the lives of children living with Aromatic Amino Acid Decarboxylase deficiency (AADCd). Your help is vital to ensure we can continue with this work and enable us to develop the ultimate cure for AADCd ... Lisa Flint

Thank you for taking the time to follow our story & donating.

We'd love you to check back here daily & follow the story of Jake, Teddy Blue, Raffi the Bumble Bee & the Mystical Yellow Flowers (previous 2 pages to the one advertised are available in the images below)

#rarediseaseday2019 #aRAREgift #CureAADC #CureAADCd #Thankyou #RAREis

About the charity

The AADC Research Trust

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RCN 1114367
AADC deficiency is a rare disabling brain disease. More than 100 children in 30 countries have been identified with the disease. It's proved fatal for some of them. The AADC Research Trust is a children's charity funding research, supporting affected families and promoting global disease awareness.

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