Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
National Organization on Rare Diseases (NORD)
CTX on Medscape
Spanish CTX Nonprofit Organization
Leukodystrophy Care Network
Global Leukodystrophy Initiative Consortium (GLIA)
Sterol & Isoprenoid Research Consortium (STAIR)
European Leukodystrophy Association (ELA)
Join our mailing list to receive information and news as we begin to gather and expand the CTX community.
1586 Sumneytown Pike
PO Box 1322
Kulpsville, PA 19443