FPIES: Rare But Real
Join us each February 28/29th as we mark Rare Disease Day, in solidarity with countless other organizations supporting individuals living with rare conditions!
Started in 2008 by EURORDIS and its Council of National Alliances, this important day is a great time to raise awareness for rare diseases like FPIES, and to support individuals affected by these rare diagnosis.
"Alone we are RARE, Together we are STRONG"
-- NORD (National Organization for Rare Disorders)
By joining together, we truly embody the strength of our FPIES community. One of the clearest examples of this is the FPIES Global Patient Registry. In honor of Rare Disease Day, join this free registry or update your family’s information if you are already taking part in this platform. The de-identified information gathered can be viewed by researchers and medical professionals. Your voice can make an impact in the future care and potential for treatments of many. Join today!
From fundraisers to educating school staff, raising FPIES awareness is essential to help our communities be better equipped to support individuals affected by FPIES.
Let's Get Involved!
Rare diseases are simply that– rare. As a result, individuals not affected by these conditions may have never heard of them, even individuals in medical professions may be unaware.
You can change that! Ask medical schools if you can speak to classes about life with FPIES from a parent perspective, bring FPIES awareness materials to school and daycare professionals, or even team up with other families to create awareness events aimed at educating entire communities.
Reach out to us for resources or to learn more. Together, we are the voice!
Raising awareness online can be as simple as sharing social media posts or as involved as sharing your family’s FPIES story via blog post or as a post on a Rare Disease page. This is a great way to not only reach your local community, but to also reach individuals around the world!
Take Action on the Hill!
Reach out to State and Federal Lawmakers
A great way to commemorate this day is by supporting legislation that can help members of our Rare Disease Community! Currently, there is legislation supporting better coverage of Medical Nutrition that needs your support! How can you get involved and/or share your story with the lawmakers that can act on this legislation? Click below to learn more and to start the conversation!
A great tool for sharing the realities of daily life with FPIES, this video can help to promote awareness in a powerful, yet concrete way.
Thank you for taking the first step and trying to learn more about what life is like for our little one with FPIES and for us as a family. We do understand that sometimes you might not know what to say or do, and that you often wish you knew what you could do to help.
Help doesn’t have to be grandiose, complex, or expensive. The effort behind it can mean more to us than you may ever imagine. . .
Page published: Feb. 5, 2019. Copyright © 2019, The FPIES Foundation