Wilhelm Foundation can today proudly announce that we have signed a cooperation agreement with ERN ITHACA where we will be Supporting Partner.
ERN-ITHACA is a patient-centred network that meets the needs for highly specialized, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders of genetic, genomic/chromosomal or environmental origin, both diagnosed and undiagnosed.
ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies. The name ITHACA also refers to the Odyssey that for many families the diagnostic journey of a child with a rare developmental disease represents.
Led by Prof. Alain VERLOES at APHP-Robert DEBRE University Hospital since March 2019, the network today consists in 70 full Member Health Care Providers from 25 Member States. Through sharing expertise, experience and resources, ERN-ITHACA aims to further patient care, research and access to information about rare congenital malformations and intellectual disability.
Rare Care - Clinical Centre of Expertise for Rare and Undiagnosed Diseases
Wilhelm Foundation is partnering with Rare Care - Clinical Centre of Expertise for Rare and Undiagnosed Diseases, Perth Children's Hospital, Western Australia.
ln February 2022,the Rare Care Centre was launched at Perth Children's Hospital in Western Australia. lt aims to cohesively coordinate and address the challenges faced by children with rare and undiagnosed diseases and their families, creating holistic, individually tailored solutions for their physical, social, and mental health needs.
Rare Care improves awareness and supports early identification of children with potential rare diseases whilst also providing improved support, care coordination and access to community resources, clinical trials, and research.
ln the first year the Centre has established the foundation of the Global Nursing Network following an international roundtable, co-hosted with Cufiin Singapore and SingHealth Duke-NUS in March of 2023. There are currently 31 countries represented in the network to date.
A focus on innovation, equity, sustainability, and scalability underpins all Rare Care activities.
Chan Zuckerberg Initiative Rare As One Partner
Wilhelm Foundation is Chan Zuckerberg Initiative Rare As One Partner, since 2022. We are very thankful for all their support.