What is the Back to Care Mentor Program?
The Back to Care program is designed to help our classical homocystinuria patients navigate their way back to care. It may also be useful for HCU patients who have been continuing with diet, but struggle or who are newly diagnosed.
How does the program work?
An individual will apply to become a mentee or mentor for the HCU Back to Care Program by filling out the survey and Authorization to Use and Release Protected Health Information for the HCU Back to Care program.
Once the survey and forms are completed, HCU Network America personnel will contact the applicant.
- Prior to starting, the applicant (both mentee and mentor) must be affiliated with a clinic for care. If they are not, HCU Network America will help facilitate referral to a clinic. Check ins should be short and based around the mentees’ needs and mentors' experiences.
The following timelines are recommended but can be flexible based upon the individual mentee/mentor relationship.
- Initial meetings between mentor and mentee are weekly.
After 3-6 weeks meetings will go to monthly.
After 3 months, the patient can choose to continue monthly, or go to a quarterly basis.
At 1 week, 1 month, 3 months and 6 months someone from HCU Network America will check in to see how your experience with your mentee/mentor is going and if there are things you need assistance with. If there are topics you need assistance with you can always reach out in the meantime.
How do I enroll?
Click the corresponding button. It will take you to a survey. The survey will take approximately 15 minutes and ask you a series of questions about you, your clinic, your relationship with the low protein diet, medical formula, Betaine, supplements, and your goals for being enrolled in the program.
How do I unenroll or cancel my permission?
You may unenroll or cancel your permission at any time. If you have questions or want to cancel your permission, please contact: Danae’ Bartke, Executive Director, HCU Network America, 15 S. Mallory Ave, Batavia, IL 60510 (Dbartke@hcunetworkamerica.org ) 630-360-2087. If you cancel your permission, you may no longer be in the program. If you cancel your permission, information that was collected and released before your cancellation may continue to be used and released as needed to maintain the reliability of the program.