2018 Rare Disease Week Washington DC

Mommy, Daddy and I went to Washington DC with other people from the Cystinosis Research Network for Rare Disease Week.  While there we were able to meet many people who are fighting different rare diseases, but who are also going through many of the same challenges that I have with cystinosis.  We were able to meet with representatives from Cory Booker, Robert Menendez, and Donald Norcross’s offices as well as sit down with South Jersey’s own Frank LoBiondo.  Mr. LoBiondo has always supported funding for NIH and many other causes important to people like me with a rare disease.  He was a super cool guy and I gave him a big high five! (He even showed me a video of his puppies!)