Rare Diseases Day 2016 gives us the opportunity, once again, to raise our voices for FPIES in solidarity with all rare diagnoses. As we honor this day, we encourage you to create a conversation about rare diseases:
• Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycares, schools, and more about FPIES. Click here.
• Share your story with your local news, on the Inspiring Families page (here) and
sign up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. (here)
• Advocate for rare disease by teaching someone about the diagnosis or joining efforts with your state legislature. Learn more about that here.
Need ideas for starting the conversation? We can help!
Need materials to share? We can help with that too!
Looking for information on rare disease statistics? Visit Global Genes and download their RDD materials: here.
Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy. Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!