Welcome to FARA’s first advocacy newsletter! 2020 brought many advocacy opportunities for FARA and the FA community, and 2021 is shaping up to be even busier! With the amount of material growing steadily, a separate newsletter was in order. You will still occasionally find time-sensitive information in the regular monthly newsletter but the majority of advocacy related material will now be shared here.
And what a great time for this newsletter to start! Rare Disease Day will be celebrating its fourteenth year on February 28th. There are many opportunities listed below where you can raise awareness for rare diseases in general, and FA specifically. Although legislative efforts will be U.S. based, there are many events that can be experienced remotely throughout the world. Hopefully, this information will ignite a desire to get involved. Advocacy is simply to change “what is” into “what should be.” Join FARA in making that change possible!