Unfortunately, rare diseases are notoriously difficult to diagnose and treat. There are many reasons why this is the case, and perhaps one of the most important is the difficulty for clinicians and scientists to meet enough patients to study their disease and outcomes.
Patients often struggle to find more information about their disorders due to their rarity and complexity. Through this patient portal, a group of kidney doctors would like to develop educational material for patients to access. Further, we would help patients connect via a patient forum and virtual coffee hours to share their experiences and mentor each other.
If you are a patient or patient caregiver and have a general question about our programs or would like to get involved, please contact us at email@example.com.
Please note that we do not give medical advice. This portal is solely for general lay education and patient-to-patient connection.