PD 07 - Building Back for Rare

Rare diseases are often chronic, severely disabling and life-threatening. Persons living with rare diseases around the world confront common health, social, and economic challenges. Despite their great overall number, the low prevalence of each rare disease results in a scarcity of expertise and scientific knowledge about rare diseases, limited access to diagnosis and holistic care, and a general lack of public awareness of rare diseases.

COVID-19 has impacted people living with rare diseases and their families across the world. At the same time the rare disease ecosystem is evolving, now is our opportunity to advance policies and strategies which will shape the future of rare. Forging partnerships and working with diverse stakeholders is essential to accelerate the rare disease agenda.