Dicerna Pharmaceuticals Patient Advocacy Charter
At Dicerna, we work to discover and develop safe and effective new medicines for serious and often rare diseases. Our goal is to improve the lives of the patients we serve.
Our success hinges on translating science into meaningful medicines, a process that is risky, time-consuming and highly regulated. Importantly, it requires understanding the needs of people affected by the diseases we study. In fact, research shows that involving patient communities is an essential step in the drug-development process.
With this knowledge in mind, we created our patient advocacy program to support, educate and empower patients and patient organizations, and to represent their interests within our organization. Specific responsibilities and activities of our patient advocacy team include:
- Advocating within our company for the needs of patients.
- Providing timely feedback to patients regarding their questions and concerns.
- Maintaining strong, transparent relationships with patient organizations.
- Communicating consistently with global patient communities.
- Collaborating to raise awareness of diseases and improve understanding of their diagnosis and treatment.
Dicerna is committed to acting with integrity and transparency in all of our interactions with patient organizations, patients and caregivers. We follow regulations and guidelines designed to guide productive and compliant relationships between industry and advocacy groups. We recognize the autonomy of patient foundations and seek to reinforce their independence. Finally, we safeguard the confidentiality of any personal information we may receive from patients or patient organizations.
Above all, we value an open dialogue with patient communities, and we encourage individuals and organizations to collaborate with us.
- A. Hoos, J. Anderson, M. Boutin, L. Dewulf, J. Geissler, G. Johnston, A. Joos, M. Metcalf, J. Regnante, I. Sargeant, R. F. Schneider, V. Todaro, G. Tougas, Partnering with patients in the development and lifecycle of medicines: A call for action Ther. Innov. Regul. Sci. 27 April 2015.doi:10.1177/21684790/5580384