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)   http://aadcresearch.org/

DeNeu   

Spanish patient organization for families affected with neurotransmitter related disorders   http://www.deneu.org/index.php/home

Proyectopol 

Organization from Spain for patients and families with Non-ketotic hyperglycinaemia (NKH)   http://www.proyectopol.com/

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

Association for SSADH deficiency affected persons from Germany  https://ssadh.wordpress.com/

Pediatric Neurotransmitter Disease Association (PND)   

Organization for children and families who are affected by pediatric neurotransmitter diseases   http://pndassoc.org/

Children Living with Inherited Metabolic Diseases   

Patient organization for inherited metabolic diseases.   http://www.climb.org.uk/

Rare Diseases Europe (EURODIS)   

Alliance of rare disease patient organizations    http://www.eurordis.org/

 

iNTD Families 

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

https://www.facebook.com/groups/980717281996184




 

 

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