Rare Diseases International (RDI), Rare Care Centre and Wilhelm Foundation

Rare Diseases International (RDI), Rare Care Centre (RCC), and Wilhelm Foundation are thrilled to announce a new collaboration to address the urgent challenges faced by millions of people living with rare and undiagnosed diseases (PLWRD/PLWUD) around the world.

This exciting initiative was officially launched on UndiagnosedDay2025 at the Global Undiagnosed Day event in Singapore, featuring a keynote address by RDI CEO Alexandra Heumber Perry, delivered via video 

This collaboration solidifies shared commitment to improving diagnosis, care, and support for individuals and families affected by rare and undiagnosed disease, building on decades of innovation and impact. It draws on the unique perspective and strengths of each organization: Rare Diseases International, the global alliance for people living with rare diseases; Wilhelm Foundation, which drives innovation and collaboration to end the diagnostic odyssey for people living with undiagnosed diseases; and Rare Care Centre, which offers a holistic, family-centred approach through to identification, coordinated care and access to research for children with rare conditions.

Through this initiative, Rare Care Centre, RDI, and Wilhelm Foundation will partner closely on several strategic initiatives including clinical service and care delivery, care pathway development, and enabling the proof of concept of the Global Network for Rare Diseases (GNRD).

Rooted in shared values of equity, inclusion, and sustainability, this collaboration will build on existing international, regional and grassroots partnerships and initiatives to improve diagnosis, care and support for people and families living with rare and undiagnosed conditions. The collaboration recognizes the value of sharing knowledge, information and expertise to improve outcomes and quality of life for PLWRD and PLWUD.


 

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.
 

A screen shot of Chan Zuckerberg Initiative's website. In the middle it's a text "Our Strategic Partners We’re proud to work alongside a number of distinguished organizations that share our goal of finding treatments and cures for rare diseases." Under the text there is 3 photos. The photo to the left is Rare Diseases International's logo, in the middle it's a man in a wheelchair holding hand with a walking woman and she has a little dog with a leash. To the right is a yellow square with Wilhelm Foundation's logo an outline of the lion Simba.

ERN-ITHACA

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-centered network that meets the needs for highly specialized, multidisciplinary healthcare for people 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.