Thursday, November 21, 2013

A Place on the Map

We love maps. In fact, our homeschooling curriculum (self-created) is based on geography. More on that later. . . So, yes. The girls love maps, even little C, who is now, wait for it. . . 18 months old! But despite our love for maps, we have often felt like a family without a compass, navigating the chaos that we know to be FPIES. We have often felt "off the grid" when we go through periods of family life seeming, well, "less than normal."

Tonight, however, we find ourselves looking at a map, and guess what?! We are ON it! That little flag? That's us! I am talking about The FPIES Foundation's ground breaking new release--- a global registry for children and families affected by FPIES! All of these years (we've been active in the FPIES community for 4 years now) of hoping that someone could share the information from the families living with this condition in an organized way with the doctors trying to help our children, and now with a click of a button, this is all possible. The FPIES Foundation has figured it out!

The other thing that B, C and I love (Daddy loves it too!) is that this registry doesn't just stand alone-- it is actually part of the National Institute of Health Global Rare Disease Registry program through a program called "Connect," by Patient Crossroads. Our information is not only going to make an impact for families but it will also make a large impact on a far larger scale.

Click on the button to connect and add your little one to the growing group on the registry. Find your place on the map-- can you find us? We've been looking for you!

The FPIES Foundation Global Patient Registry

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