The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Cauda Equina Foundation was founded in 2016 and serves to improve the quality of life for individuals living with cauda equina syndrome (CES). The foundation focuses on four areas: 1. Scientific research to pioneer the field of CES for novel treatments, the establishment of standards of care and clinical practice guidelines to prevent diagnosis errors and improve patient outcomes, and define the disease scope and disability. 2. Education to give patients the power to live their best lives with CES and to assist the healthcare community in the diagnosis, treatment, and prevention of CES to improve patient outcomes, educate the community on the severity of the early signs and symptoms of the disease to prevent delayed diagnosis and improve patient outcomes, provide caregivers with information on living with CES with their loved one and to know the signs and symptoms of caregiver fatigue to improve family dynamic outcomes related to CES. 3. Advocacy- Listening to the needs of our patient members and their caregivers and representing their voice where its needed to advocate for equal access, accessibility, preserving dignity, and improving their quality of life. 4. Patient support programs and services- to give CES patients and caregivers tools and support needed for patients to live their best lives. Also, providing educational programs and resources for the healthcare community to diagnose, treat, and prevent cauda equina syndrome.
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