Patient Advocacy

Patient Advocacy at Amicus

Welcome to Amicus Patient & Professional Advocacy

Amicus Patient & Professional Advocacy collaborates with patient organizations, individual patients, their caregivers, and healthcare practitioners to ensure we are doing all that we can to help support the rare disease community. We will continue to provide initiatives that bring purpose and empowerment to help ease the difficulty that members of the rare disease community experience. We are dedicated to being the bridge between patients, their families, and resources, offering access to support and services across their disease experience. Our dedication to patients and their families is what drives us to truly provide healing beyond disease. Our passion drives our commitment to members of the Lysosomal Storage Disorder, Epidermolysis Bullosa, and CDKL5 deficiency communities by:

  • Listening and learning from individuals and their families affected by these diseases;
  • Searching for new and better therapies;
  • Incorporating patient input into the design of clinical trials for those therapies as our research advances through the drug development process; and
  • Providing useful information and resources to help manage the daily challenges of living with a rare, genetic disease.

We have several tactics to help support both patients and their families. Currently, we’re in the process of developing several treatments that we hope will deliver meaningful benefits to rare disease communities. Additionally, we seek appropriate ways that we can actively participate at relevant events to educate, support, and advocate on behalf of patients.

As you navigate the experience with the rare disease community, please feel free to contact us with ideas and questions:

Jayne C. Gershkowitz
Chief Patient Advocate