Two Important Ways You Can Be Part of Rare Disease Day on Feb. 28

Easy ideas for getting involved

facebook_rare_disease.jpg#1 Raise Awareness

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.

You can choose from:
a. I Love Someone Rare (generic)
b. I Love Someone Rare (personalized with a photo)
c. I am 1 in 2 Million (personalized with a photo)

If you would like to have a photo added, send an email to nick@crookedguy.com. Please include a high res 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!

Instructions for changing your Facebook profile photo:

1. In Facebook, click on your Facebook profile picture. 
2. A new window will open and you will need to upload the image you have selected. Don’t forget that Nick Mahler can help you add your own photo (instructions above)
3. Resize the photo using the toggle circle at the bottom center of the upload window. Drag it to the left until the entire graphic fits within the crop space. Click here to see which button will help you resize the image.
4. Then hit save

Be sure to also use these hashtags with your Rare Disease Day posts: #CAREaboutRARE and #cureFOP. We can’t wait to see everyone’s Profile photos change. 

#2 Raise Funds for FOP 

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 it. 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 $1,950. Please partner with the IFOPA to advance FOP research in honor of Rare Disease Day. Let’s support one — maybe even two — days of discovery at UPenn on Rare Disease Day in 2017. Please make a gift on February 28 to show that we’re all in this together, every day.

Once you have your Facebook page ready to go, 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/teamcurefop.

Encourage people to give whether they “Love Someone Rare” or they are “1 in 2 million.” We accomplish more when we work together!

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