When a condition is extremely rare, finding the most accurate and up-to-date information available can be a challenge. There are no known specialists of this condition. Instead of a specialist for the overall condition, it is usually treated by specialists of various aspects of the condition, including orthopedics, urology, neurology, and gastroenterology. An explanation of treatments and the personal experiences of individuals who have undergone these treatments are provided here, offering insights and perspectives of the range of medical procedures and outcomes.
Please note: The information provided throughout this site is not intended to be construed as medical advice. We have gathered current information available to address common questions. Only your physician with your full medical history can determine what is advisable for you.
The information here has been gathered to answer frequent questions questions, whether you just want an overview or you want to explore a specific question in depth.
Characteristics of SA/CRS (chart) is a report of the condition, co-occurring conditions, and range of ways in which it impacts individuals
Resources and information for medical professionals are provided
Other resources of information about this condition include:
The National Organization of Rare Disorders (NORD)