The global rare disease community faces many challenges, including access to diagnosis, appropriate care and treatment, resources, and broader representation. This Rare Disease Day, #RAREis and Horizon Therapeutics have created #RAREis Representation, a new program to address the global unmet need for diversity, equity, inclusion and allyship in rare disease.
Throughout 2022, #RAREis Representation will be sharing diverse stories, hosting community conversations around advancing global equity in rare disease, and taking action to support people in the rare disease community. According to the World Health Organization, approximately 400 million people globally are impacted by a rare disease. Advancing rare disease equity requires all of us to do our part.
Pledge your support for #RAREis Representation using the resources below.
We want to hear from you. Answer the below questions to address key issues surrounding diversity, equity, inclusion and allyship in the global rare disease community.