This week is rare disease week! Saturday February 29th is International Rare Disease Day! In celebration of this day of awareness, we are selling Be the Hope! Be the Change! t-shirts. Check out our shirts at Bonfire. There are many ways to help spread awareness of SETBP1 disorder. Here are just a few ideas:
– Print off and share our Information Sheets with medical professionals, therapists, education providers
– Print off and share our SETBP1 disorder Brochures
– Set up a personal Facebook fundraiser and share with friends and family to help promote awareness
– Update your Facebook profile photo with a “I love someone with SETBP1” profile cover and share your story on Facebook
– Post a family story, diagnostic journey story, or a bit about your child and their diagnosis on Facebook and/or Instagram
– talk about SETBP1 disorder with Friends and Family
– share your store at https://www.rarediseaseday.org/tell-your-story