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Patient Ambassador Network

The Patient Connection Network provides a direct way to reach for connection and support as needed for members of the Alport syndrome Community (ages 13+) via phone, email and other electronic communication.

Patient Ambassadors use their life experiences and training to assist other patients in their journey with facing Alport syndrome. Patient ambassadors are trained by Alport Syndrome staff and represent ASF by remaining professional and empathetic in all communications with their fellow patients, and have access to guidance from our Medical Advisory Committee as needed.

FACING ALPORT
SYNDROME TOGETHER

The Patient Connection Network provides a direct way to reach for connection and support as needed for members of the Alport syndrome Community (ages 13+) via phone, email and other electronic communication.

GOALS

The goal of the program is to provide support and connection, which can be powerful tools for rare disease patients at many different points in their disease progression, from diagnosis to changes in symptoms or life circumstances. Patient Ambassadors can provide ASF resources, offer an empathetic ear, and share their own experiences and ways they cope with living with a rare genetic condition.

CONNECTING

A pairing of patients can be changed based on the discretion of either party. Pairs will be matched based on the patient’s preferences addressed in the application form, age, and similarities/appropriate level of life experience with renal disease, including dialysis and transplantation.

PROCESS

Application forms to get connected to a Patient Ambassador request 3-4 hour windows during the week when you are most open to communication, particularly over the phone. Once initial communication with the Patient Ambassador is established, frequency is based solely on the discretion of the two parties. While a phone call once every two weeks is suggested at first, it is not absolutely necessary in today’s world of instantaneous digital communication. Naturally, the frequency will vary greatly between patient age groups. The key is to establish communication and ensure it continues as needed. Patient peers may choose to extend their communication and friendship outside of the program, based on their discretion.

PRIVACY

Patient Ambassadors and patients they are connected to are required to sign and return confidentiality agreements to ensure the safety and privacy of all parties.

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