Discovering your child suffers with multiple disabilities is a tragedy for any family.  Learning that it is one the World’s most rare chronic diseases can be completely overwhelming and a very frightening experience.

We hope we will be able to support you and your affected child by providing the most up to date information about AADC Deficiency throughout this web site.

As well as registering with The AADC Research Trust:

• find out about Local Parent Support Groups – not AADC Specific
• self educate and understand AADC the disease – use our medline dictionary link (displayed on every page throughout this site) for any words and terminology you do not understand
• communicate with other affected AADC Deficiency families and share your experiences
• contact us with any questions you would like to ask and any information you would like to share
• e-mail any member of The AADC Research Trust for support and advice about AADC Deficiency
• explore other possible AADC support groups
• evaluate for home care (skilled nurses and therapists vs. non skilled parents).  It is not a forgone conclusion that ‘skilled’ is the best option for your child.  Discuss the entire needs of your child’s care with those involved in their well being.  From diagnosis, it is important to keep a history of your child’s development, i.e. videos, photos, diaries, records and assessments
• research the availability of financial and medical entitlements for chronically ill children in your area.
• discover whether you qualify for respite care – if needed
• prepare a long-term plan by using the information contained within the ‘What Do I Do Now’ links