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Fibrodysplasia Ossificans Progressiva (FOP) Resources

The following organizations provide educational resources related to FOP and support research to help families living with FOP and other rare diseases.

International Fibrodysplasia Ossificans Progressiva Association (IFOPA)
The IFOPA is a well-organized patient advocacy group with over 500 members that focuses on medical research, disease awareness and education for those living with FOP.

Genetics Home Reference
Genetics Home Reference
Genetics Home Reference provides easy-to-understand medical information about the effects of genetic diseases.

Clinical Trials
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

Canadian Organization for Rare Disorders (CORD)
CORD provides a strong common voice to advocate for health policy and a healthcare system that works for people with rare disorders.

National Society of Genetic Counselors
The National Society of Genetic Counselors consists of healthcare professionals who work with individuals and families affected by genetic diseases.

Genetic Alliance
Genetic Alliance is a leading nonprofit health advocacy organization. They work with individuals, families, and communities to find information and interventions for disease.

National Organization for Rare Disorders (NORD)
NORD provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

Global Genes
Global Genes is a leading rare disease advocacy organization dedicated to eliminate the challenges of rare diseases by spreading awareness and providing education and resources to impact affected patients and their families.

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 692 rare disease patient organisations in 63 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.

FOP Patient Groups Around the World

Over 10 FOP patient groups around the world support local affected families, fund research, and promote awareness of the disease.

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