What are the potential benefits to registering and participating in the CFR?
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 CFR.
- Receiving general care guidelines and educational resources specific to SLSMD disorders.
- Receiving information about meetings/conferences specific to SLSMD disorders.
- 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.