Resources for Cooper's Family

Comprehensive catalog of human genes and genetic disorders. Search "FARSA" for the latest scientific literature and gene information.

Public archive of reports of the relationships among human variations and phenotypes, including FARSA variants.

Search the world's largest biomedical literature database for published research on FARSA, aminoacyl-tRNA synthetases, and interstitial lung disease.

European reference portal for rare diseases and orphan drugs. Includes disease descriptions, expert centers, and patient registries.

Expert-authored summaries of inherited conditions, including management guidelines and genetic counseling information.

Leading nonprofit organization committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and patient services.

One of the leading rare disease patient advocacy organizations in the world. Provides tools, resources, and connections for rare disease families.

Global alliance of rare disease patient organizations advocating for the needs of 300 million people living with rare diseases worldwide.

Science-driven rare disease advocacy organization focused on accelerating the development of treatments for rare disease patients.

National organization that amplifies the voices of families and youth to drive systems change and improve health care for children and youth with special health care needs.

Provides case management services and financial aid to Americans with chronic, life-threatening, and debilitating illnesses.

Connects families of children with rare diseases to share experiences, find specialists, and access support resources.

Search Facebook for "FARSA" or "aminoacyl-tRNA synthetase disease" to find private groups where families share experiences and support each other.

Dedicated to finding a cure for pulmonary fibrosis and other interstitial lung diseases. Offers a care center network and patient resources.

Resources on interstitial lung disease, lung health, and finding pulmonary specialists for children and adults.

Dedicated to children with interstitial and diffuse lung disease. Provides family support, physician resources, and research funding.

The National Society of Genetic Counselors directory helps you find a certified genetic counselor near you who can guide your family.

For families with rare or undiagnosed conditions, the NIH UDN connects patients with leading researchers and clinicians across the country.

NIH-funded network of research consortia studying rare diseases. Find active clinical trials and research studies.

Official U.S. government site to find federal benefits programs your family may be eligible for, including disability and health coverage.

The Social Security Administration's program to quickly identify serious conditions that qualify for disability benefits.

Information on Medicaid waivers and programs that provide health coverage and services for children with complex medical needs.