March 2018 eNewsletter
This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
FOP Awareness Day is April 23 

 April 23, 2018 is International FOP Awareness Day. Be prepared by purchasing your FOP Awareness Day apparel now through March 25 . Shirts are available in youth, women’s and men’s styles and zip-up sweatshirts are also available in youth and adult sizes. Get yours today >

A portion of every sale benefits the IFOPA’s 2018 FOP Awareness Day Campaign and our work to support FOP research, education and support, and advocacy and awareness. 

Stay tuned for more information about the 2018 FOP Awareness Day celebration in early April—and let us know how you’re raising awareness for FOP by sharing your photos and stories using the hashtag #cureFOP. 

Looking for water bottles, hats and other FOP gear? Get yours at our online IFOPA store .
FOP Patient Directory Now Available Online!

Great news! The FOP Patient Directory is here. This helpful resource contains profiles for individuals with FOP, complete with photo and contact information, so you can get in touch with others in the community. If you submitted your profile, watch your email today for login instructions. If not, there’s still time to be included.
 

Questions about the Patient Directory? Contact Shelly Oliver, Donor Relations and Administrative Coordinator, at together@ifopa.org.
FOP Community Funds Research in Honor of Rare Disease Day

See what a difference we make when we come together in support of FOP research!

Get to Know the International Clinical Council on FOP
The IFOPA is pleased to share this press release with information about the founding and purpose of the International Clinical Council on FOP.

Share Your Suggestions—Family Services Survey

We’ve created a survey to get your input on the types of programs and services you and the FOP community would find most helpful. Your replies will be used to shape future offerings so please take the survey .

We're looking for feedback from teens and adults living with FOP, along with parents, spouses/partners and other caregivers – so pass the survey link on to your friends and family in the FOP community. 

The survey is open until Monday, April 16, 2018 at 11:59 PM Pacific Time (GMT-8) . Take the survey >
New Fundraising Video Available for FOP Fundraisers
Check out the newest video from the IFOPA for Team #cureFOP fundraisers and fundraising event coordinators. This video is prefect for email and social media fundraising too!

Making Childhood the Top Priority

The de Leon family makes sure Miles gets to just be a kid. Get to know Miles, who was diagnosed with FOP shortly before he turned 2, and how the de Leons are adapting to life with FOP.