Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
What’s it really like to live with CTX?
Thank you for participating in the Unlock CTX Patient-Focused Drug Development Meeting!
For the first time, people living with CTX and those who care for and about them were able to share their experiences with the people who research, develop, and regulate treatments for CTX.
On September 14, 2021 from 11:00 AM – 3:00 PM Eastern time, the first patient-focused drug development (PFDD) meeting dedicated to CTX was hosted by the United Leukodystrophy Foundation in collaboration with the CTX community.
Thank you for helping to Unlock CTX!
Watch the pre-meeting webinar to learn more about patient-focused drug development meetings.
Supporting Organizations
Thank you to our partner organizations for their support and promotion of the Unlock CTX PFDD Initiative:
Alex, The Leukodystrophy Charity
European Leukodystrophies Association
Hunter’s Hope Foundation
Leukodystrophy Australia
Leukodystrophy Resource and Research Organisation Inc. (LRRO)
National Organization for Rare Disorders (NORD)
Spanish CTX Association (AEXCT)
Thank you to these generous sponsors for their unrestricted educational grants in support of the Unlock CTX PFDD initiative:
