[1][4][8][9][10] The date was chosen because February 29 is a "rare day,"[11] and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States.

[7] Individuals observing Rare Disease Day took part in walks and press conferences to raise public awareness of rare diseases, organized fundraisers, and wrote en masse to government representatives;[9] health-related non-profit organizations across numerous countries also held events, gatherings, and campaigns.

[12] The day also included an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases.

"[13] In 2009, Rare Disease Day was observed for the first time in Panama, Colombia, Argentina, Australia, Serbia,[14] Russia,[15] the People's Republic of China, and the United States.

[24] By 2012, thousands of patient advocacy organizations had gotten involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day.