Navigating the complex world of Undiagnosed, Ultra-rare and Rare Disease can be overwhelming, confusing and frustrating. Relevant resources are often the ‘gold mine’ for the unique needs of these communities. We aim to support this community by providing access to information, education programs, and resources through our webinars and events, highlighting relevant resources in our newsletters, emails and sharing information for the community on our website.
We are happy to announce that we are part of the new Librarey ambassador program, where rare disease and disability communities discover and share resources.
Librarey – LibRAREy is designed for the rare disease and disability community. It’s a collaborative resource library where families, caregivers and advocates, and professionals discover and share resources effortlessly.