Introducing the Alport Syndrome Peer Support Network:
Conquering Alport Syndrome Through Continued Communication
The Alport Syndrome Peer Support Network (#ASFPSN) will provide a more direct and private means of support for members of the Alport Syndrome Community (ages 13+) via phone, email and other electronic communication.
Alport Syndrome Mentors will use their life experiences to assist those currently going through events that may seem intimidating and unfamiliar to them. Mentors will represent ASF by remaining professional, optimistic and empathetic in all communications with their Mentees.
The support network will also allow Mentors to remind Mentees of specific ASF-related news, events and ways to interact with the community.
The goal of the program is to provide comfort to those affected by Alport Syndrome who feel a disconnect with their diagnosis and normal way of life. Mentors can provide ASF resources, offer an empathetic ear, and share their own experiences and ways they coped with living with a rare renal condition.
Frequency of Communication:
Application forms for Mentees will allow them to select 3-4 hour windows during the work week when they would be most open to communication, particularly over the phone. Once initial communication with the Mentor is established, frequency is based solely on the discretion of the two parties. While a phone call once every two weeks is recommended, it is not absolutely necessary in today’s world of email and texting and other forms of instantaneous communication. Naturally, the frequency will vary greatly between our younger and older patients. The key is to establish a communication and ensure it continues until the Mentee feels confident to exit the program. A Mentee may choose to extend their communication and friendship outside of the program, based on their discretion.
Matching Mentees and Mentors:
A Mentor/Mentee pairing can be changed based on the discretion of either party, if necessary. Pairs will be matched roughly on age, and similarities/appropriate level of life experience with renal disease, including dialysis and transplantation.
Mentors will represent ASF by remaining professional, optimistic and empathetic in all communications with their Mentees and will be prepared for their roles following a virtual training program conducted by members of the ASF Board and staff.
Both Mentors and Mentees are required to sign and return confidentiality agreements to ensure the safety and privacy of all parties.
To apply to be a Peer Mentor, click here.
To request a Peer Mentor, click here.