Professor Sally-Ann Lynch appointed Vice-Coordinator and future ERN Coordinator of ERN ITHACA

Congratulations to UCD School of Medicine’s (opens in a new window)Professor Sally-Ann Lynch, clinical geneticist at the Children's Health Ireland, on being appointed Vice-Coordinator and future ERN Coordinator of ERN ITHACA.

Elected on November 28 in the first round with an absolute majority and 100% voter turnout, Prof Lynch will take up her role as ERN Coordinator at the end of September 2027. Until then, she serves as ERN Vice-Coordinator.

On her appointment Prof Lynch said, ‘‘I am thrilled to be elected and very thankful to the ERN ITHACA team for managing the process. ERN ITHACA is one of the largest ERNs and I am aware the task is daunting but also exciting. I am sincerely grateful to Children’s Health Ireland for supporting me in the submission.’’

The ERN ITHACA is the (opens in a new window)European Reference Network (ERN) for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders.

About ERN ITHACA – from their(opens in a new window) website:

ERN ITHACA are a patient-centred network that seeks to meet the needs of a highly specialised healthcare for patients with rare malformation syndromes and rare intellectual or other neurodevelopmental disorders of both genetic (genomic or chromosomal) and environmental origin, both diagnosed and undiagnosed.

European Reference Networks (ERNs) are networks of European healthcare providers expert in a particular set of rare diseases that were established to pool together clinical expertise available across Europe and to concentrate knowledge and resources on rare and/or complex diseases.

The name ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies. It also refers to the Odyssey that for many families the diagnostic journey of a child with a rare developmental disease represents.

ERN ITHACA was first established by Pr. Jill Clayton-Smith and the Manchester University NHS Foundation Trust, in 2017. After a successful development of the network, its coordination was transferred to French Assistance Publique – Hôpitaux de Paris (APHP) on November 2018, in anticipation of Brexit. Pr. Alain Verloes, head of the Robert Debré Clinical Genetic Department, was thus elected as the network’s new Coordinator.

The network today consists in 71 expert clinical centres and 45 European Patient Advocacy Groups (EPAGs). Through sharing expertise, experience and resources, the ERN ITHACA community aim to further patient care, research and access to information about rare congenital malformations and intellectual disability.