Clinigen starts push to help rare disease groups engage pharma

Clinigen wants to help rare disease patient groups NaviGATE the pharma landscape. The pharma services company is starting the initiative by collecting feedback on what patient advocacy groups need to inform the development of an educational program. 

U.K.-based Clinigen has created the so-called NaviGATE program with representatives of the rare disease community and patient advocacy groups. The goal is to provide support and tools that help groups engage with pharma companies and other stakeholders and ultimately to drive more patients to participate in rare disease research and improve access to medicines. 

In a statement, Lorna Pender, global patient engagement lead at Clinigen, framed the new initiative as a response to the fact that “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.”

Through education, Pender hopes to help the “community use its voice in an informed way to influence industry, healthcare providers and regulators.” First, Clinigen wants to understand what the community needs, leading it to launch a survey titled “Closing the Knowledge Gap Between Patient Organisations and The Pharmaceutical Industry.”

As the survey explains, Clinigen wants to create a program that provides information on how medicines are made available and how to engage with the pharma industry. The first training program will happen in the U.K., and the subjects reflect that, with Clinigen also planning to discuss the U.K. trade group ABPI and how to support the community when a product is made available on an early-access basis.

Clinigen is aiming to make the results of the survey available later this year through a white paper. Once it has the data, the service provider plans to create “an inclusive, accessible, multi-format training program for the rare community.”