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Shadow Jumpers

LongSleeveCrew.jpgWelcome to Shadow Jumpers! This is a page for EPP kids and parents by EPP kids and parents. Shadow Jumpers was created to help give kids with Erythropoietic Protoporphyria (EPP) and their families a place to learn about this rare disease, read tips and tricks learned over time and to hear from fellow kids.  Through spreading awareness, fellow EPP interviews, tips to protecting yourself outside and some insight for parents, we hope all families living with EPP will look at this condition as a challenge they can overcome.  Be sure to check out all the Shadow Jumper resources! We’d love to hear from you. Reach out to us anytime on shadowjumpers@porphyriafoundation.org!!

A main goal of Shadow Jumpers is to help kids living with Erythropoietic Protoporphyria do things they have always wanted to do but have not been able because of the sun. There are only several hundred diagnosed cases of this ultra-rare genetic disorder in the United States – so we need to learn from and support one another! Pain from the sun combined with the mental discomfort kids can feel from having to cover up may lead kids to avoid certain activities, relationships and paths in life.

Shadow Jumpers wants to show (and remind) kids that they can still follow their dreams! Whether that’s trying to play a sport outdoors, going on a family vacation, camping or whatever comes to mind, Shadow Jumpers wants to help. Click around to learn about some awesome EPP kids, how we are trying to do our part and how you can too!

Here are ways to connect with Shadow Jumpers!

 

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