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 Registry to 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.
Need
ideas for starting the conversation? We can help! Need materials to share? We can help with that too!
Still looking for more ways to get involved? You can:
Still looking for more ways to get involved? You can:
- 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!
Wanting to learn more information about rare disease statistics
in general? Visit Global Genes or RareDiseaseday.org pages to get
informed and download their RDD materials.
This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation.
