Clinigen Unveils Educational Program for Rare Disease Patients and Organizations

Image Credit: Adobe Stock Images/Лилия Захарчук

Clinigen, a pharmaceutical services company, has launched NaviGATE, a UK-based pilot educational program for rare disease patient advocates and organizations. The program was co-created by Clinigen with the involvement of representatives of the rare community and patient advocacy groups; it aims to offer navigational support and tools to better engage with health care providers (HCPs),industry, and regulatory bodies. The overall goal is to facilitate greater participation in rare disease research and development, and to enable increased access to medicines for more patients.

It starts with a research questionnaire provided to the rare disease community that aims to provide an understanding of the needs of this community and the gaps that should be addressed. Clinigen’s intention is to use the learnings from this questionnaire to inform the creation of an educational training program.

“At Clinigen, we are committed to incorporating the voice of the patient and to working in partnership with patient advocacy groups,” says Lorna Pender, Clinigen’s global patient engagement lead. “Patients with rare diseases often struggle to understand how to cut through the complexity of this industry and make their voices heard among decision makers. This unique initiative will help us co-design a program which should help this community use its voice in an informed way to influence industry, healthcare providers, and regulators.”