31/07/2021 IFOPA - International Fibrodysplasia Ossificans Progressiva Association

Emergency medical treatment information

Could it be FOP?

Just Diagnosed

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FOP Registry

The IFOPA is a 501c3 nonprofit organization that provides hope to individuals with FOP and their families through
education and support programs while funding research to find a cure and raising awareness for the rare genetic
condition fibrodysplasia ossificans progressiva (FOP).

The IFOPA was founded in 1988 by Jeannie Peeper who had never met anyone else with the disease. This isolation was
typical before the IFOPA was formed, and Jeannie's goal was to bring people with FOP together. Today, the IFOPA is
the umbrella organization for people with FOP worldwide and the place for FOP families to come
for advocacy, education and support.

Our mission is to fund research to find a cure for FOP while supporting, connecting and advocating for
individuals with FOP and their families, and raising awareness worldwide. 

Our vision is a cure for FOP, accessible worldwide. 

Quick Links
FAQs

Clinical Studies & Trials

FOP Patient Directory

Find FOP International Organizations

Our Community

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Programs and Services

The IFOPA provides many programs and services to our members, families and community.

These are a few of those programs:

Research  

Patient and Family Support  

The IFOPA serves as a trusted resource to people with FOP and their families by providing flexible and tailored
support and connections through all stages of life with FOP.

The IFOPA also enables informed decision-making about treatments and research participation by the community
of people with FOP.

The IFOPA equips FOP national organizations based outside of the United States to serve individuals with FOP
and their families in their respective geographic areas. 

Learn More. 

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Advocacy and Awareness  

Latest News
April 15, 2021
International Clinical Council on FOP Releases Updated Treatment Guideline
Read More >

April 14, 2021

Support the First-Ever Global FOP Awareness Day
Celebrate Awareness Day with a Gift that Will be Matched
Read More >

April 09, 2021

Danni Lang Honors Her Sister, Heather Niles, with Her Monthly Gift
Read More >

Events
2021 Midnight Sun Color Run
Saturday, July 31, 2021 at 12:00 AM
through August 01, 2021

Webinar | Discussing What Matters Most and Planning for End of Life Care
Wednesday, August 11, 2021 at 01:00 PM

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Webinar | A Research Update on Gene Therapy

Thursday, August 12, 2021 at 12:00 PM

In Pursuit of a Cure 2021

Wednesday, August 25, 2021 at 07:00 PM

Global Genes RARE Patient Advocacy Summit

Tuesday, September 28, 2021 at 06:00 PM
through September 29, 2021

American Society of Bone & Mineral Research Annual Meeting 2021

Friday, October 01, 2021 at 12:00 PM
through October 04, 2021

ZipperQ 2021
Saturday, October 02, 2021 at 02:00 PM

Learn More

IS IT FOP?

JUST DIAGNOSED

REGISTRY

Make a Difference

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DONATE

CONNECT

FUNDRAISE

WHAT IS FOP?

PATIENTS & FAMILIES

RESEARCH & CARE

GET INVOLVED

NEWS & EVENTS

ABOUT IFOPA

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