Question 1

What is the Tethered Cord Syndrome Research Initiative for Rare Diseases?

Accepted Answer

We are a nonprofit organization dedicated to advancing research, raising awareness, and providing support for individuals affected by tethered cord syndrome (TCS), particularly when it co-occurs with rare diseases.

Question 2

What is our mission?

Accepted Answer

Our mission is to bridge the gap between clinical care and research by collaborating with families, clinicians, and researchers to improve understanding, diagnosis, and treatment of TCS in the context of rare diseases.

Question 3

When should I suspect my child has tethered cord syndrome?

Accepted Answer

On the "What is Tethered Cord Syndrome?" page, there is a list of signs and symptoms of TCS. (Change this)

Question 4

I suspect that TCS is a comorbidity of my child's rare disease. What should I do?

Accepted Answer

Please contact us with the name of your child’s rare disease. We’re committed to expanding our understanding of tethered cord syndrome across the rare disease spectrum. Once we hear from you, we’ll create a survey for you to fill out. Your insights help us identify patterns, guide future research, and advocate for better recognition and care.

Question 5

Can I send you my child's MRI to read?

Accepted Answer

Don't know yet

Question 6

Do you see patients?

Accepted Answer

No we are a research initiative that uses data to perform studies (change this)

Question 7

Do you make recommendations for neurologists?

Accepted Answer

something

Question 8

How can I participate in your research efforts?

Accepted Answer

You can take part by completing a survey related to your or your child’s rare disease. If we don’t currently have a survey for your specific condition, please contact us with the name of the disease and your interest in TCS. We’ll work with you to create a relevant survey — your input is essential to advancing our research and improving recognition of tethered cord syndrome across rare diseases.

Question 9

Are there ongoing studies for TCS?

Accepted Answer

We maintain an up-to-date list of scientific studies related to TCS and associated rare diseases. Check our "Research" section or contact us for the latest information.

Question 10

How do you collaborate with researchers and clinicians?

Accepted Answer

Our team includes researchers and clinicians dedicated to understanding tethered cord syndrome in the context of rare diseases. We partner with medical professionals, specialists, and institutions to share knowledge, identify patterns, and develop research projects that can lead to earlier recognition and improved care. These collaborations are central to our mission.

Question 11

How can I contact the Tethered Cord Syndrome Research Initiative?

Accepted Answer

You can reach us via the contact form on our website or email us at info@tetheredcord.org.