Awareness Day

2023 Global
FOP Awareness Day

April 23 – FOP Awareness Day – celebrates the day it was announced that the FOP gene, ACVR1, had been discovered.

2023 marks the 17th anniversary of the announcement of the gene discovery.

Press release and photos from that special day
Hope. Believe. Wish.  2023 Global FOP Awareness Day


Hope. Believe. Wish.

Since Jeannie Peeper founded the IFOPA in 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 remind you about the resilience of our community and inspire you to join us in raising awareness.

Please join our fight to end misdiagnosis by making a gift today. Gifts in April will be matched so your gift will go twice as far.

SUPPORT GLOBAL FOP AWARENESS DAY
Every size gift matters and every size gift is matched (up to $50,000).
DONATE NOW

 



Our unified vision is a cure for FOP, accessible worldwide, so FOP organizations from around the world are coming together to celebrate FOP Awareness Day.

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Argentina
Fundación FOP
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Australia
FOP Australia
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Brasil
FOP Brasil
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Canada
Canadian
FOP Network
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Denmark
Svenska
FOP-föreningen
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Finland
Svenska
FOP-föreningen
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France
FOP France
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Germany
FOP e.V.
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Italy
FOP Italia Onlus
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New Zealand
FOP Australia
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Norway
Svenska
FOP-föreningen
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Romania
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Russia
FOP Russia
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Serbia
FOP Serbia
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South Africa
FOP Africa
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Spain
AEFOP
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Sweden
Svenska
FOP-föreningen
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Netherlands
FOP Stichting
Nederland
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United Kingdom
FOP Friends®
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United States
IFOPA

 

For a list of all countries served by FOP organizations, visit ifopa.org/fop_international_organizations


Get Involved in Raising Awareness All Month Long

 

Wear Your FOP Awareness!

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 April 6. International orders are still welcome but may arrive after April 23.

 

 

Share FOP Facts

The 2023 FOP Awareness Day campaign is running all month long on Facebook, Instagram, Twitter and LinkedIn. From April 1-23, we'll post a fact or video each day for you to reshare or retweet. Visit the IFOPA's page or the social media page of your local FOP organization (see list above) for the day's FOP fact.

 

Listen to these FOP Stories

 

Support the FOP Community

Donations made to the 2023 Global Awareness Day will have TWICE the impact… funding more research, providing more family services and raising more awareness. A generous donor has provided $50,000 in matching funds so EACH GIFT MADE IN APRIL TO THE GLOBAL FOP AWARENESS DAY CAMPAIGN WILL BE DOUBLED.*

DONATE NOW

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