How are Families Affected by Rare Disease?
2. Emotionally (feeling isolated and overwhelmed)
What Can YOU do to Help Families Affected by Rare Disease?
1. Provide a sounding board, listen
2. Involve the family in social activities (often families feel unable to engage in typical social gatherings)
3. Help to raise awareness
Rare Disease Day Visions of Solidarity: "Alone we are rare. Together we are strong".
In honor of Rare Disease Day, The FPIES Foundation is launching 'Hugs for Heroes;' a new initiative to support FPIES Families. We will be collecting volunteer-crafted lovie blankets, stuffed animals, and super hero capes to distribute to FPIES children in need of a little bit of extra comfort during in-hospital procedures. This ongoing program makes it easy to contribute as you are able, but will make a big impact on little FPIES heroes.
For more information about how you can help, please contact a.lefew@thefpiesfoundation
Rare Diseases Day Handprints Across America
This post was written by the Executive Board of The FPIES Foundation