Our campaign is now complete. 121 supporters helped us raise £6,904.00
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The campaign has now expired but it's not too late to support this charity.
Visit the charity's profileEvery 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
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
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
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
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
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
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
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