Additional Genetic Resources

The International 22q11.2 Foundation is a nonprofit organization dedicated to supporting the needs of families and individuals affected by chromosome 22q11.2 differences by promoting awareness, state-of-the-art clinical care, cutting edge research endeavors, and solidarity with related associations around the globe.

One of the primary goals of TSSUS is to provide comprehensive, quality resources that educate and support the TS community. Many people visit our website after receiving a new prenatal, early childhood, teen, or even adult Turner syndrome diagnosis. Whether you are a new visitor or a long-time member, we hope you will find the information you need to make informed decisions about your own or your child's health and care.

The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy.

To create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must work together. Simons Searchlightis building an ever growing natural history database, biorepository, and resource network. Families like yours are key to meaningful progress.

Creating a path to treatment for chromosome 3q29 syndromes through funding research, community-building, and increasing access to information and resources.

Through diligent networking and advocacy, the 17q12 Foundation raises awareness, provides up-to-date information, and facilitates resources to affected individuals and families through supporting research of this rare chromosomal anomaly.

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Our mission is to treat and integrate 16p11.2 Genetic Variants seamlessly throughout the health, education and societal landscapes by 2030. We do it for our children.

We connect people living with Turner syndrome to the specialized care, cutting-edge research, and global community they deserve — from diagnosis through every stage of life.