Patient Board

Who we are

The Patient Board consists of patient organisations that are involved in inherited metabolic rare diseases from across Europe, and collaborates with Healthcare Professionals.

Patient representatives are actively involved in the decision-making process and planning activities of the network. The MetabERN members have developed close collaborations with national and European patient organisations. They will build on their strong relationships to extend the network’s engagement with the wider IMDs patient community and break the isolation that many single patients currently experience. There is an elected European Patient Advocacy Group (ePAG) for MetabERN. Patient representatives are members of the network’s board and committees with the precise role to contribute to the network’s development, including acting as a ‘communication and information’ link between the patient and clinical community.

Within the Patient Board, a Steering Committee and Single Point of Contacts (SPOCs) are present. These groups are an essential aspect of the running and development of the Patient Board. They will collaborate with Healthcare Professionals to map and understand patients’ needs. Furthermore, they will advocate for patient involvement in developing patient care pathways and developing patient-focused outcomes to assess the current care standards to understand gaps and identify solutions. The principle of inclusiveness drives MetabERN, and it intends to bring together patient organisations that work within the area of rare inherited metabolic rare diseases.

 

Steering Committee

Colin Brown

Krabbe UK

Trustee of Krabbe UK

Christina Lampe

Medical Liaison

University Hospital of Giessen and Marburg, Germany

Sylvia Sestini

aimAKU

President of aimAKU and WP6 SPOC

Rita Francisco

Portuguese Association for CDG and other Rare Metabolic Diseases

CDG SPOC

Alan Finglas

Multiple Sulfatase Deficiency Action Foundation

Founder and Research Manager

Single Point of Contacts

Hanka Dekker

WP3 and PM-MD

Alexander Niehaus

NOMS

Anne Hugon

AFG - Association Francophone des Glycogénoses

CFAO

Nuno Marques

LSD and WP5

Carlota Pascoal

WP2 and WP7