What are the potential benefits to registering and participating in the DFR?

Title: 
What are the potential benefits to registering and participating in the DFR?

Benefits to registering may include:

  • Participating in the community forum.
  • Participants may be able to compare their survey responses to the aggregated and unidentified survey responses provided by other individuals registered in the DFR.
  • Receiving general care guidelines and educational resources specific to DDX3X Syndrome.
  • Receiving information about meetings/conferences specific to DDX3X Syndrome
  • Storing and accessing your medical records in a secure database, retrievable by you at any time and from anywhere with an Internet connection.
  • Receiving notifications of clinical studies and trials and receiving notifications about future natural history studies and potential travel grants to Centers of Excellence for clinical care.