1 Million steps to £1,000,000.00

There are


rare diseases

1 out 2

patients diagnosed with a rare disease is a child


people suffer from a rare disease worldwide

8 out of 10

rare disease are caused by a faulty gene


1 out 2

rare disease do not have a support group

3 out 10

children with a rare disease will not make it to their 5th birthday


of rare disease have no approved treatment

1 out of 10

are affected by

rare disease




is the average wait time for an accurate diagnosis 

Rare disease effects more


Cancer & AIDS


The campaign...

The AADC Trust is running the  '1 Million steps to £1,000,000.00' as part of our #oneRAREstep Campaign to raise money for children suffering from Aromatic Amino Acid Decarboxylase deficiency (AADCd) to access treatment that will significantly alter symptoms and save lives. The pioneering Gene Therapy treatment AAV2-hAADC is performed by Professor Krystof Bankiewicz and Professor Miroslaw Zabek at the Interventional Neurotherapy Center, Brodno Hospital, Poland. This treatment is setting the benchmark for potential future treatments of diseases with single gene defects.

The aim...

We aim to raise £1 million to fund Gene Therapy treatment for our AADCd children. Look how easily this could be obtained...

Just 0.1% of the WORLD population would need to donate only £1

We need to raise

£1 million

The current WORLD population is

7.7 billion

To reach our target just 

0.01% of the WORLD 

population would

need donate only £1 

Just 1.5% of the UK population would need to donate only £1

We need to raise

£1 million

The current UK

population is

66.04 million

To reach our target just 

1.5% of the UK 

population would

need donate only £1 

EVERY £1 has value...

How to get involved...


You can donate via our #oneRAREstep JustGiving main campaign page or, if there is a particular AADCd effected child that you would like to support, please select their individual personal appeals.  

Social Media...

For more information and updates on the Campaign please follow us on our Social Media platforms...

  • Grey Facebook Icon
  • Grey Twitter Icon
  • Grey YouTube Icon
  • Grey Instagram Icon

Disclaimer: The AADC Trust reserves the right that in the event it successfully raises the required funds or acquires government funds from the country where a child resides, to cover the treatment we will use any  surplus funds raised from their personal page to assist with their off treatment costs such as travel and accommodation. Any remaining funds will be used by the Trust for the purpose of this Campaign, including distributing them to other children registered for the treatment.

quick links

stay in touch

find us

  • Grey LinkedIn Icon
  • Grey Facebook Icon
  • Grey Twitter Icon
  • Grey YouTube Icon
  • Grey Instagram Icon


To contact us please email via: enquiries@aadcresearch.org and we will endeavour to reply to you as soon as possible. We apologise in advance for any delays in our response, during this time. Our staff are on furlough and working from home. Please bear with us. Thank you for your patience.


The AADC Research Trust

Soper Hall, 2 Harestone Valley Road,

Caterham, Surrey, CR3 6HY

Registered Charity

UK & Wales No: 1114367

© AADC Research Trust