Tomorrow, Saturday, March 11th, there will be a webinar regarding RARE-X, our data collection program.

In April they are hosting a campaign to get the participation of various researchers and doctors who will be looking at our community and we want YOUR child represented. Without your participation, your child’s gene mutation cannot be considered. I will be posting a zoom link soon for this meeting. In the mean time, please reach out with any questions you might have. Looking forward to seeing some faces.

Link for register:
https://us06web.zoom.us/meeting/register/tZcqc-ivqzMjGNV5n4reSgmE7OzFjJ5Iw7tq?fbclid=IwAR3j6VhTfq5bKIzpi1xsk9JgO6GLllfRs68c30MEMJqfZPgf9heWr3-OD5Q

More about Rare X and CHAMP1
RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. RARE-X equips patients to share their data with global researchers, clinicians, and drug developers.
 

CHAMP1 Research Foundation did a presentation together with Rare X in June/22,  on  Rare X CHAMP1 data collection program launch. If you missed  you can watch the recording below:
Watch it here: https://us02web.zoom.us/rec/share/Q5Mn50T5F3BqXAJB3YaW6s-azmPRvAoT7BU1U-ioatZuuuURP2gQWWoq7AId5VWR.gRge4ZWYVXY70A5Z?fbclid=IwAR2bJh-32MY9k1kuq9Or_8QpQ6HxXCItYQWPCWIrvv4fSc8KNRyAhfihzJ0
(passcode: iKer9%Q1)!

To watch Rare-X presentation in our family conference last October please click here:https://youtu.be/3nmTnsw3A98

It was so informative and really explained how important data collection is… remember, it begins with US, the families! We are the future of CHAMP1 

Also, to begin enrollment, please click https://champ1.rare-x.org/

For a quick guide on getting started: https://rare-x.org/wp-content/uploads/2022/05/RARE-X-QUICK-GUIDE-and-FAQ-05-02-22-1.pdf?fbclid=IwAR3NSx6lEdIMb_gKqJRZ4ibb1kD5T3f7fAqS-uAtQkaN0V1qBpmdkhAlzxc