Please explore the links below to scientific societies and organisations that can provide you with further information and resources in the field of Metachromatic Leukodystrophy (MLD), metabolic disorders, rare diseases and treatment development. We will add further organisation links as the programme develops.



 



SINP (Italian Society of Neuropaediatricians)

Link


 

SIMMESN (Italian Society of Metabolic Diseases and Newborn Screening)

Link


 

SINPIA (Italian Society of infantile and adolescent neuropsychiatry)

Link


 

SFNP (Société Française de Neuropédiatrie) 

Link


 

SFIEM (Société Française des Erreurs Innées du Métabolisme)

Link


 

SFDN (Société Française de Dépistage Néonatal)

Link


 

CETL (Comité d'Evaluation du Traitement des maladies Lysosomales)

Link


 

NVKN (De Nederlandse Vereniging voor Kinder Neurologie - Dutch Paediatrics Neurology Society)

Link


 

ESNLT (Vereniging tot bevordering van onderzoek naar Erfelijke Stofwisselingsziekten in het Nederlandse taalgebied - Dutch speaking SSIEM involving NL and Flanders part of Belgium)

Link


 

British Paediatric Neurology Association

Link


 

Medics 4 Rare Diseases

Link


 

British Society of Blood and Marrow Transplantation and Cellular Therapy

Link


 

British Inherited Metabolic Diseases Group

Link


 

GNP (Society for Neuropediatrics - Germany)

Link


 

APS (Working Group for Pediatric Errors of Metabolism)

Link


 

EPNS (European Paediatric Neurology Society)

Link


 

Child Neurology Society

Link


 

EBMT (European Society for Blood and Bone Marrow Transplantation)

Link


 

SSIEM (Society for the Study of Inborn Errors of Metabolism)

Link


 

EAN (European Academy of Neurology)

Link


 

AAN (American Academy of Neurology)

Link


 

The Global Leukodystrophy Initiative (GLIA)

Link


 

Please explore the links below to family groups that can provide you with further information and resources in the field of Metachromatic Leukodystrophy (MLD), metabolic disorders, rare diseases and treatment development. 

 



Leukodystrophy Care Network (LCN)

Link


 

National Organisation for Rare Diseases

Link


 

Leukodystrophy Family Forum

Link


 

MLD Foundation

Link


 

Believing for Bryleigh

Link


 

The Morgan Project

Link


 

MLD Support Association UK

Link


 

Cure MLD (Specialist Centers)

Link


 

Arch Angels (Screening Campaign)

Link