Rare Diseases Day International theme for 2013 was “Rare Disorders Without Borders”. With continued increased awareness, the FPIES community will continue to break down these borders- not only connecting us across miles (and countries) also between patient and practitioner, researcher, schools, childcare, and all aspects of our children’s lives that will continue to keep them safe and thriving with this rare food allergy.
The FPIES Foundation was proud to, once again, be a Rare Diseases Day Partner Organization and to follow Rare Diseases Day activities, encouraging FPIES families participation!
FPIES families helped to show the impact of Rare Diseases across the nation, and bringing further awareness to FPIES in our online communities by participating in the “Handprints Across America” campaign. Participants were encouraged to print a Handprints Across America flyer and take a picture to have displayed on the Rare Diseases Day Gallery. FPIES made the gallery- a few times!
A fellow FPIES mom, Stacy Ruskuski,created her own unique Handprints Across America symbol by adding FPIES and her daughter’s name to the RDD logo and shared it with the online support communities. Solidarity in rare diseases.
FPIES is a rare disorder and everyone has a story. Sharing your story helps others understand what it is like to live with Food Protein Induced Enterocolitis Syndrome. National Organization for Rare Disorders (NORD) collects compelling stories, and encouraged submissions during Rare Diseases Day week. NORD is continuing to collect stories for their 30th Anniversary Celebration. Submit your story to NORD today!
You can also continue to support families with FPIES by submitting your story for the Inspiring Family Stories page of our website. So many families have expressed their gratitude for the family stories shared, raising awareness and support. You are not alone.
FPIES was included in a report and photo slideshow put together by CBS News for Rare Diseases Day that “includes photos from the Handprints Across America gallary. Great support for the main goal of the day, which is education and awareness.”
We thank you for your support during Rare Diseases Day weeks activities and furthering awareness about FPIES. We thank every member of this community, for helping one another “Alone we are rare, together we are strong”.
This post was written by the Executive Board of The FPIES Foundation.