Help Soft Bones Celebrate Rare Disease Day 2017

This year, Soft Bones is celebrating Rare Disease Day by focusing on the things that make us unique beyond HPP. You have probably noticed our HPP community has some very talented people. This year we want to put a face to HPP and show the world how we are not defined by our disease.

It’s February and Rare Disease Day is coming up on February 28th. For those of us with HPP — we know that our disease isn’t the only thing about our patient community that is rare!

This year, Soft Bones is celebrating Rare Disease Day by focusing on the things that make us unique beyond HPP. You have probably noticed our HPP community has some very talented people. This year we want to put a face to HPP and show the world how we are not defined by our disease.

So, we want to feature you and your rare talent. All we need you to do is send us your name, your type of HPP and a photo with your rare talent – and we will create a graphic for you to share through your own social media channels. We will also include the photos on our website as well.

PLEASE SEND PHOTOS NO LATER THAN FEB 18!!!

Here are a few examples to get your creative juices flowing. A special thanks to Liberty, Polly and Sue for allowing us to feature them in our examples!

Rare talents can include:

  • Joke telling
  • Silly faces (tongue rolls, double jointed limbs)
  • Sports
  • Hobbies
  • The list goes on!

We look forward to celebrating our rare disease and our rare talents with you!

Submit Your Rare Talent Here 

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