The FPIES Foundation Presents Community Opportunity for World Rare Disease Day 2015

February 10, 2015

The theme for Rare Diseases Day 2015 is “Living With a Rare DiseaseDay-By-Day, Hand-in-Hand.” In honor of this, the FPIES (Food Protein Induced Enterocolitis Syndrome) Foundation has asked the community to give one word to describe what living with FPIE means. Here’s how you can get involved:

1. Visiting the FPIES website and Facebook WRDD Event page to click and share banners, logos, and profile pictures created just for RareDisease Day awareness of FPIES.

2. Share awareness materials with your online community – visit our website and Facebook album to share these flyers online.

3. Start the Conversation. An awareness conversation does not have to be formal or lengthy. Some great settings include but are not limited to moms’ groups, breastfeeding support groups, new parent education groups, staff meetings (at schools, nutrition clinics, etc). Pick a setting that is meaningful to you and then make a call!

4. Distribute awareness materials in your community – at the doctor’s office, at daycare or school, at your playgroup….. Download, print and share these flyers in your community:

5. Host an awareness event in your community

A) Support Group Meeting- get together and share what it is like to have a rare diagnosis.
B) Fundraising Event – host a walk, host an FPIES awareness event, and participate in ongoing online fundraisers.

6. Wear your awareness materials!  Café Press Foundation gear and Rare But Real t-shirts, with thanks for the original design to Crystal Martin, these t-shirts are now available through the Foundation Café Press store.

Stay Connected

Sign up for updates straight to your inbox.