Patient organizations

A list of patient organizations

AADC Research Trust  

Charity Organisation that helps children and their families affected by Aromatic Amino Acid Decarboxylase Deficiency (AADC)


Spanish patient organization for families affected with neurotransmitter related disorders


Organization from Spain for patients and families with Non-ketotic hyperglycinaemia (NKH)

DIG PKU: Fachgruppe Neurotransmitterstörungen  

German group for patients and parents with all kinds of neurotransmitter related disorders

SSADH-Defizit e.V.: Verein für die seltene Stoffwechselerkrankung des GABA-Neurotransmitterweges 

Association for SSADH deficiency affected persons from Germany


Organisation to support families with children suffering from neurotransmitter diseases, dopa-responsive dystonia and other neurometabolic disorders from Serbia

Pediatric Neurotransmitter Disease Association (PND)   

Organization for children and families who are affected by pediatric neurotransmitter diseases

Children Living with Inherited Metabolic Diseases   

Patient organization for inherited metabolic diseases.

Rare Diseases Europe (EURODIS)   

Alliance of rare disease patient organizations


iNTD Families 

 Facebook Group where patients with neurotransmitters related disorders and their families can meet and exchange their experiences:



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