REGISTER TODAY
Get Connected to our Frizzle Parent and Caregiver Communty by Registering your Frizzle child or children today!
REGISTER HERE
WHY REGISTER?
By registering your child or children with Finding Hope for Frizzle (FRRS1L), you become an important part of our growing global Frizzle community.
As a registered Frizzle Family:
Join our global Frizzle community and connect with other families affected by FRRS1L genetic disease.
Participate in Frizzle Family Forum meetings, where families can connect, learn, ask questions, and hear important updates.
Join our private Facebook FRRS1L Support Group, where Frizzle families share experiences, ask questions, exchange ideas, and support one another.
Receive important email updates about our treatment development program, Natural History Study, future clinical trial, research, and other Frizzle news.
Help us understand the global FRRS1L community. Registration provides valuable information that helps us identify where Frizzle patients are located around the world and better understand the size of our community.
Help advance FRRS1L research. Information about our community can help inform researchers conducting the FRRS1L Natural History Study and improve our understanding of the disease.
Stay connected to treatment development. We will keep registered families informed about our progress toward gene replacement therapy and our efforts to move treatment into the clinic.
Every Frizzle patient matters. Every family matters. By registering, you help us build a stronger global community, advance research, and move closer to treatment for Frizzle kids.
NOTE: Registering your FRRS1L child or children is completely optional.