Do you have
Alport Syndrome ?

Do you know someone
who does ?


Help us research an investigational drug for kidney disease in patients with Alport Syndrome. The HERA Clinical Trial is evaluating the safety and effectiveness of an investigational study drug in Alport patients.


We recognize that coping with a rare genetic condition like Alport syndrome can present many challenges. Because Alport syndrome affects the kidneys, people living with the condition experience gradual loss of kidney function. This may lead to end-stage kidney disease that requires dialysis or kidney transplant. Other symptoms, such as loss of hearing and vision, can occur during late childhood or early adolescence.

Because Alport syndrome symptoms can worsen over time, it is important to not ignore them. Staying informed and seeking the right support can help ensure your well-being.

Learn more


If you qualify to participate you will receive the investigational drug as an injection under the skin on a weekly basis and for approximately 2 years. The first year 30 patients receive active investigational drug and 15 patients receive placebo (inactive medicine). The second year every patient receives active investigational drug. Periodic tests and assessments will be performed either at the study center or at home.

More details on study can be found here

The study is looking for participants who:

  1. Are male or female between 18 and 55 years old
  2. Have a confirmed diagnosis of Alport syndrome
  3. Have not received a kidney transplant
  4. Are not currently on dialysis
  5. Do not have a diagnosis of diabetes mellitus


Should you qualify and decide to enroll, you will:

  1. Receive all study-related care at no cost
  2. Receive close monitoring during the study
  3. Receive compensation for time and travel expenses (lodging can be foreseen at no cost)
  4. Have the opportunity to potentially help develop new treatments for patients with Alport syndrome

Locations and contact details can be found here