Sun, Mar 13|
RARE-X Webinar Patient-led Data Collection Program
RARE-X will explain how they provide a secure platform for patient led data collection of key information of our FOXP1 children. Those that choose to contribute will ultimately help researchers develop an evidence based understanding of FOXP1 and possible treatments.
Date & Time
Mar 13, 2022, 1:00 PM – 2:00 PM EDT
About The Event
This webinar is an introduction to the foundation partnering with RARE-X to establish an international data collection program. RARE-X provides a secure data base platform for numerous rare disease organizations that meets international standards to ensure the individual's identity is protected.
This webinar will explain how researchers need many foxes to contribute to the database so a comprehensive FOXP1 knowledge base can be established. This ultimately will help researchers, drug developers, (pharmaceutical companies), and clinicians understand the syndrome and lead to future treatments that are evidence based.
Please RSVP this event, you will then receive an email with the link to the webinar. This session is in English.