“In the U.S., a rare disease is one that affects fewer than 200,000 people. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.” from: Rare Disease Day 2012
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 firstname.lastname@example.org
“Rare but strong together”. Feb. 29, 2012 is Rare Diseases Day. Join us in raising awareness to FPIES! Rare Diseases Day Handprints Across America
This post was written by the Executive Board of The FPIES Foundation