#ShowYourRare on February 28 Rare Disease Day

Three easy ways to get involved

1) #ShowYourRare

Many of you have already been spreading awareness about FOP during the month of February — thank you! It’s easy to do and it’s not too late to participate. All you have to do is upload one of the FOP-branded Rare Disease Day photos to use as your Facebook profile photo.

Choose from the following:

1_in_2_million_2018.jpg i_love_someone_rare_2018.jpg i_love_someone_rare_generic_2018.jpg

If you would like to have a photo added, send an email to nick@crookedguy.com. Please include a high resolution photo and let him know which photo frame you would like to use (“i’m 1 in 2 million” or “i love someone rare”). Nick will email it back to you ready to upload. A huge thanks to Nick Mahler for helping us personalize the campaign! If you would like to use the "i love someone rare" profile image that doesn't include a photo, you can download it here

Here are instructions for changing your Facebook profile photo. We can’t wait to see everyone’s profile photos change.

2) Spread Awareness

Share this FOP fact in the days leading up to Rare Disease Day. This will help remind people how rare FOP is. Click on the image below to download.


Use these hashtags with your Rare Disease Day posts: #ShowYourRare and #cureFOP

3) Raise Funds for FOP Research

Every single day counts in our critical work to find treatments and a cure for FOP. In fact, research is so important, the IFOPA invests more than 60% of our annual budget on research. A single day of the IFOPA’s commitment to funding research at the University of Pennsylvania’s Center for Research in FOP and Related Disorders costs $1,800. You can partner with the IFOPA to advance FOP research in honor of Rare Disease Day. 

Let’s support one — maybe even two — days of research at UPenn on Rare Disease Day. Please make a gift on February 28 to show that we’re all in this together, every day. Then, invite your friends and family to help you support FOP research for treatments and, one day, a cure by sharing this link https://ifopa.salsalabs.org/rarediseaseday.

Receive a #cureFOP car decal for making a gift!

Rare Disease Day isn't just about raising funds, it's about raising awareness. Each person that donates $20 or more will receive a #cureFOP car decal to help you raise FOP awareness all year long.


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