On Saturday, July 14, 2018, I went to Newport Beach to attend the Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) event, who are a group ranging from 13-25 years old in the rare disease community. They call themselves YARR for short. The event was about an hour and a half drive from my house. I'm 25, so I just made the cut.
We played a fun game of bingo, in the beginning, to get to know everybody. Then, the co-founders gave a presentation about the goals of the program and rare disease week in Washington DC. After, we had lunch and then closed with some more rare disease programs that were upcoming. One of the goals of YARR is ensure young adults have a growing impact on public policy and the legislative process and to have representation in every state. So, if you are interested in learning more and maybe joining this group, click here.
There were about 10-15 people present including Andrea Garcia Alvarez, who is an FA patient from SoCal. I have known her and her family for like three years, but I had no clue she'd be coming.
Overall, this is a great program for younger people. The co-founders are awesome, and I'm glad I got to meet them and all the other people. I can't wait to Hear You YARR! Thank you for the opportunity, Lindsey, and Jean!