Turner syndrome

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Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version March 2024

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Turner syndrome?

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Advocacy Organizations

Boston International Turner Syndrome Summit

The Boston International Turner Syndrome Summit (BITSS) is a non-profit organization that was founded to create a fulfilling, safe, and fun summer experience for young women with Turner syndrome between the ages of 12 and 19. Our goal is to help our attendees forge new memories, friendships, and skills with other teens with TS from around the globe. BITSS is committed to creating an environment that promotes independence and community. We are dedicated to making our summit an enriching place for our attendees, as well as taking measures to keep parents informed while their daughters are away. BITSS hopes to start an international community to augment national and regional organizations. We provide an opportunity to meet other young women with TS from different backgrounds, countries, and continents.

Collaborative Research Advocacy for Vascular Anomalies Network (CaRAVAN)

As the research-based umbrella organization for all vascular anomalies, we are on a mission to develop a unified network of patients and their families, advocates, researchers, and clinicians who influence research from initial concept and design to patient care delivery

Project FAVA

Project FAVA is a 501(c)(3) non-profit patient advocacy group that promotes awareness of fibro-adipose vascular anomalies, educates patients, their families, and the global community, and provides helpful resources to those with FAVA. Project FAVA also advances research to move the needle towards more effective and less invasive treatment options for FAVA patients.

Clinical Trials

For a list of clinical trials in this disease area, please click here.