On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses. The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.
A rare disease is defined as “rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. ” (Rare Disease Day)
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, daycare, schools, and more about FPIES.
- Share your story with your local news and on our Inspiring Families page.
- Participate in patient surveys by signing up for the FPIES Global Patient Registryto be sure your child’s voice is part of FPIES research.
- Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature.
- Join hands
- Create a social media profile picture frame and share it with us for our social media album
- Tell your story on Rare Disease Day and Global Genes to be published.
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!
This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation.