1 Introduction Rare diseases (RD) encompass a broad range of conditions that affect fewer than one in 20,000 people (Rare Disease International, n.d.). They are often genetic, long-term, multisystemic, and significantly detrimental to quality of life (Rare Disease International, n.d.). Despite the rarity of these conditions, the cumulative impact of up to 10,000 known diseases affects approximately 300 million people worldwide (Haendel et al. 2020; Rare Disease International, n.d.).