WELCOME Frizzle Families
Welcome to our Frizzle Family Community!
We know getting a diagnosis of Frizzle (FRRS1L) genetic disease is both shocking and hard to process. We are here to walk with you! We want to get you and your family connected into our community so we can support, help and encourage you as you navigate this journey of disease. Please reach out any time via email at contact@FRRS1L.org.
Below are some helpful steps to get you started on your journey.
1. REGISTERLet’s get you and your Frizzle child or children connected into our special Frizzle community. Please register to begin the process.
2. Set Up Zoom MeetingWe want to know you, your Frizzle child or children, and your story of Frizzle. Set up a zoom meeting to meet our leadership and share your story. We want to connect with you!
3. Connect your DoctorsAs we develop treatment and begin a clinical trial for Frizzle patients, it is helpful to also connect the patient’s doctors with our team. Please email your Frizzle patient’s doctors asking them to register with us. Doctors or physicians can register here or you can send our pre-written email by selecting the button below.
4. Photo and Bio
Send us a photo and bio for the website so we can show case your amazing Frizzle child or children! See examples here. Fill out the form by selecting the button below.
5. Private Facebook Group
We have a private FRRS1L Support Group on Facebook that is only for Frizzle parents, guardians, or caregivers of a Frizzle patient. This is a special place where you can share stories, ask questions, and connect with other Frizzle families from around the world. Ask to join and make sure to answer the membership questions so we know to let you in. (Note this is only for parents, guardians, or caregivers of a Frizzle patient. If you are not one of those we encourage you to follow along on our regular public social media pages.)
5. Connect on Socials
Make sure to connect and follow along on our social media links. See below links in the footer of the page.
Frizzle Family Forums
One of our mission areas as an organization is to support Frizzle families by creating a community of Hope for FRRS1L gene disorder children and families to connect, communicate, collaborate, and support one another. We host bi-monthly meetings over zoom called Frizzle Family Forums. The forums range from topics of care for Frizzle patients, expert presentations, speakers, organizational updates, and open discussion among families. To be added to our forums please first register your Frizzle child or children. If you have already registered and have not recieved a meeting invitation please email: contact@frrs1l.org
