Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
Educational Resources
Videos
- CTX – Dr. Andrea DeBarber, Dr. Brian Wishart, and John Wolf
- CTX Video – Dr. Michael Steppie
- Rare Disease Spotlight: Cerebrotendinous xanthomatosis (CTX) – Dr. P. Barton Duell
- Diagnosing Leukodystrophies – Dr. Genevieve Bernard, Montreal Children’s Hospital and Dr. Joshua Bonkowsky, University of Utah
- Genetic Counseling for the Leukodystrophies – Julie Cohen, Kennedy Krieger Institute
- Physical Therapy – Jennifer Keller and Dr. Kathy Zackowski, Kennedy Krieger Institute
- Care for Children with Leukodystrophies – The Children’s Hospital of Phila
Downloadable Information
To further your knowledge of CTX, we invite you to explore these educational resources:
- Genetic Counseling FAQs, Peri Cavusgil, MMSc – Emory Genetic Counseling Program
- Family Care, Colleen Kintner – Family Counselor
- Cerebrotendinous Xanthomatosis: A Rare Cause of Bilateral Achilles Tendon Swelling and Ataxia, A Case Report – James W. Brodsky, Andrew D. Beischer, Dip Anat, Cara East, Elizabeth Soltero, G. Stephen Tint, Gerald Salen and Julie Silverman
Join The CTX Alliance
Join our mailing list to receive information and news as we begin to gather and expand the CTX community.
Support the CTX Alliance
1586 Sumneytown Pike
PO Box 1322
Kulpsville, PA 19443
info@ctxalliance.org
Latest CTX Articles
- Apparent underdiagnosis of Cerebrotendinous Xanthomatosis revealed by analysis of ~60,000 human exomes November 18, 2021
- Cerebrotendinous Xanthomatosis September 13, 2021
- Epidemiology, diagnosis, and treatment of cerebrotendinous xanthomatosis (CTX) August 27, 2021