What We Do
We are a research and advocacy initiative dedicated to uncovering and understanding Tethered Cord Syndrome (TCS) in individuals affected by rare and complex conditions. Our work bridges clinical research, patient experience, and public education to support earlier recognition and improved care for those living with this underdiagnosed disorder.
1
Research & Discovery
We investigate the presence of Tethered
Cord Syndrome across a wide range of rare diseases. By partnering with clinicians, researchers, and patient communities, we work to identify patterns, improve diagnostic criteria, and expand knowledge about how TCS may contribute to unexplained or overlapping symptoms in rare conditions.
2
Education & Awareness
TCS often goes unrecognized,
especially in the context of rare and
multisystem diseases. We create and share accessible educational resources designed to inform patients, families, and healthcare providers about the signs, risks, and clinical relevance of TCS. Through outreach efforts and partnerships, we aim to raise awareness and support informed decision-making.
3
Patient Centered Collaboration
Our initiative is grounded in the lived experiences of patients and families. We actively listen, learn, and co-create with those directly affected, ensuring that our work reflects the real-world challenges of navigating rare conditions with limited visibility. These insights guide our research priorities and outreach strategies.
4
Building Clinical Capacity
We engage with healthcare providers and medical institutions to improve clinical recognition and care pathways for TCS. This includes contributing to ongoing education, supporting interdisciplinary collaboration, and sharing research findings that can enhance diagnostic and treatment approaches.
5
Advocacy & Impact
We advocate for the inclusion of TCS in
broader rare disease research, clinical guidelines, and policy discussions. By amplifying the voices of patients and surfacing new evidence, we aim to help shape a more responsive and equitable healthcare system for those affected by
complex, underdiagnosed conditions.