Get Involved in Raising Awareness
All Month Long
Help Spread Awareness!
1. GET AN FOP T-SHIRT. In order to receive your t-shirt in time for Global FOP Awareness Day, US orders must be placed b.y March 31. International orders are still welcome, but may arrive after April 23.
2. Click here to FRAME YOUR FACEBOOK PROFILE PICTURE with an FOP awareness message (available in 11 languages).
Take Part in the 23 Days of FOP Awareness Challenges
Support the FOP Community
1. Donations made to the 2021 Global Awareness Day will have TWICE the impact… funding more research, providing more family services and raising more awareness. A generous donor has provided $40,000 in matching funds so each gift made in April to the Global FOP Awareness Day Campaign will be doubled.*
2. Want to encourage others to support the FOP community? It’s easy when you set up a Facebook fundraiser. Need help getting started? Contact Cathryn Roys, Community Fundraising Manager, at [email protected].
*Up to $40,000
Uniting to Cure FOP
Since 1988, people with fibrodysplasia ossificans progressiva (FOP) have come together from around the world for support, to develop connections and to advance what is known about FOP through their participation in family and scientific meetings and clinical studies and trials. Their efforts have also funded millions of dollars of research to find treatments and, one day, a cure for this devastating disease.
We hope the facts and stories shared on this page of people living with FOP will educate you about the resilience of our community and inspire you to join us in raising awareness.
Listen to These FOP Stories
Help Spread Awareness!
1.GET AN FOP T-SHIRT. In order to receive your t-shirt in time for Global FOP Awareness Day, US orders must be placed by March 31. International orders are still welcome but may arrive after April 23.
2. FRAME YOUR FACEBOOK PROFILE PICTURE with an FOP awareness message (available in 11 languages).
International FOP Awareness Day is
Thursday, April 23
April is the month the worldwide FOP community goes above and beyond to spread FOP awareness. This year, FOP organizations from around the world are coming together to celebrate FOP Awareness Day with a unified, global message – Uniting to Cure FOP.
Starting on April 1, we are issuing 23 Days of FOP Awareness Challenges and we need your help flooding social media with messages about FOP.
Start by changing your Facebook profile pic with a Global FOP Awareness Day frame. Each day there will be an FOP fact to post or video to share. You’ll also have opportunities to post a selfie in your FOP awareness t-shirt. Your participation will help us raise support that will fund more research, provide more family services and raise more awareness of FOP. You'll even have the chance to send the International Clinical Council on FOP a message of thanks. Don’t forget to add the hashtag #cureFOP to your posts.
April is an important month to make a BIG IMPACT! Each day we'll post the challenges below on social media and in the FOPOnline email group. Don't miss out!
FOP Awareness Day
April 23 – FOP Awareness Day – celebrates the day it was announced that the FOP gene, ACVR1, had been discovered.
15 years 2021 marks the 15th anniversary of the announcement of the gene discovery.Press release and photos from that special day
This year, FOP organizations from around the world are coming together to celebrate FOP Awareness Day with a unified, global message – Uniting to Cure FOP.
FOP Italia Onlus
South African F.O.P. Association
For a list of all countries served
by FOP organizations, visit ifopa.org/fop_international_organizations