Rare Disease Day is 19 days away! We’d like to share this story about how a PURA family is raising awareness for PURA Syndrome by lobbying their state legislature for better healthcare. Do you have a story to share? Put it in the comments below! Interested in joining our newly formed Advocacy committee? Email [email protected] to get connected. #puraperfectstory #purasyndrome #puraperfect #RareDiseaseDay
