Patient Organisations

MetabERN members have developed close collaborations with international and European patient organisations and will build on their strong relationships to extend the network’s engagement with the wider Inherited Metabolic Disease patient community and break the isolation that many patients currently experience.

National Patient Organisations

VKS

Volwassenen, Kinderen en Stofwisselingsziekten

Patient Representative Hanka Dekker Website [...]

BOKS

Belgische Organisatie voor Kinderen en Volwassenen met een Stofwisselingsziekte VZW

Patient Representative  Lut De Baere Website [...]

AISMME

Associazione Italiana Sostegno Malattie Metaboliche Ereditarie

Patient Representatives Giuliana Valerio Manuela Vaccarotto Website [...]

Aspida Zois

Shield of Life

Patient Representative Marios Vakanas Website [...]

AOA Subnetwork

Aim AKU

Associazione Italiana Malati di Alcaptonuria

Patient Representative Sylvia Sestini Website [...]

FGA1

Familia GA1

Patient Representative Beatriz Casado Verrier Website [...]

HCU

Homocystinuria Network Australia

Patient Representative Tara Morrison Website [...]

LFF

Les Feux Follets

Patient Representatives Marie Balanca-Devaux Website [...]

PM-MD

MEPAN

MEPAN Syndrome

Patient Representative Danny Miller Website [...]

CFAO

AFG

Association Francophone des Glycogènoses

Patient Representative Anne Hugon Website [...]

ISMRD

The International Advocate for Glycoprotein Storage Diseases

Patient Representative Jenny Noble Website [...]

Fett-Sos

Selbsthilfegruppe für angeborene Fettsäurenoxidationsstörungen

Patient Representative Marin Thiel Website [...]

KHI

Ketotic Hypoglycemia International

Patient Representative Danielle Drachmann Website [...]

LSD

AIG

Associazione Italiana Gaucher

Patient Representatives Laura Brunori Fernanda Torquanti Website [...]

MSD Action Foundation

Multiple Sulfatase Deficiency Action Foundation

Patient Representative Alan Finglas Website [...]

ISMRD

The International Advocate for Glycoprotein Storage Diseases

Patient Representative Jenny Noble Website [...]

Krabbe UK

Krabbe UK

Patient Representative  Colin Brown Website [...]

VML

Vaincre les Maladies Lysosomales

Patient Representatives Anne Gregoriades Website [...]

The CATS Foundation

Cure and Action for Tay-Sachs

Patient Representative Daniel Lewi Website [...]

IGA

International Gaucher Alliance

Patient Representatives Tanya Collin-Histed Website [...]

FFA

Finish Fabry Association

Patient Representative Anna Meriluoto [...]

Hand in Hand gegen Tay-Sachs und Sandhoff

Patient Representative Folker Quack Website [...]

Pompe DE

Pompe Deutschland eV

Patient Representative Thomas Schaller Website [...]

FIN

Fabry International Network

Patient Representative Martynas Davidonis Website [...]

AGR

Asociația Gaucher România

Patient Representative Michaela Dan Website [...]

AIAF

Associazione Italiana Anderson-Fabry Onlus

Patient Representative Stefania Tobaldini Website [...]

Rarissimas

Associação Nacional de Deficiências Mentais e Raras

Patient Representatives Nuno Marques Luisa Pereira Website [...]

AFNP

Association Française Niemann Pick

Patient Representative Luigi DiStefano Website [...]

NPUK

Niemann-Pick Disease UK

Patient Representative Toni Mathieson Website [...]

MPS Europe

Mucopolysaccharidoses Europe

Website [...]

FBB

FUNDACJA BOHATERA BORYSA

Patient Representative Tomasz Grybek Website [...]

PD

SLO

SLO Deutschland e.V.

Patient Representative Anne Kalweit Website [...]

JMR

JMR Foundation for persons with Smith Lemli Opitz Syndrome

Patient Representative Karin Mossler Website [...]

CDG

CDG UK

Congenital Disorders of Glycosylation UK

Patient Representative Julia Boonnak Website [...]

APCDG-RMD

Portuguese Association for CDG and other Rare Metabolic Diseases

Patient Representatives  Sandra Brasil Rita Francisco Carlota Pascoal Dorinda Silva Paula Videira Website [...]

NOMS

Asglutdiece

Glut1 y Dieta Cetogénica

Patient Representative Covadonga Diaz Martinez Website [...]

Aglutinate

Asociación por la vida con Glut 1

Patient Representative Alexander Niehaus Website [...]

De Neu

Asociación de enfermedades de los Neurotransmisores

Patient Representative Francisco Penarrubia Website [...]