Clinigen, a pharmaceutical services company based in the UK, is launching the NaviGATE initiative to empower patient advocacy groups within the rare disease community. This program is being developed in collaboration with representatives from rare disease communities and patient advocacy groups, with the primary objective of providing valuable support and resources. The goal is to enable these groups to effectively engage with pharmaceutical companies and other stakeholders, ultimately increasing patient participation in rare disease research and enhancing access to medicines.
Lorna Pender, Global Patient Engagement Lead at Clinigen, has described this initiative as a response to the challenges faced by patients with rare diseases who often struggle to navigate the complex pharmaceutical landscape and have their voices heard by decision-makers.
The core strategy behind NaviGATE is education. Clinigen aims to equip the rare disease community with the knowledge and tools required to advocate for their needs within the industry, healthcare providers, and regulatory bodies. To kickstart this endeavor, Clinigen has initiated a survey titled “Closing the Knowledge Gap Between Patient Organizations and The Pharmaceutical Industry.” The survey’s purpose is to gather insights into the specific needs and requirements of the rare disease community.
Once the survey results are compiled, Clinigen intends to publish a white paper later this year, making the data available to the public. With this information in hand, Clinigen plans to develop an inclusive and accessible training program, offered in various formats, to benefit the rare disease community.
The initial training program will be conducted in the UK, with topics aligned with the region’s healthcare landscape. Clinigen will also address aspects such as the UK trade group ABPI (Association of the British Pharmaceutical Industry) and strategies to support the community when a product becomes available through early access programs.
Overall, Clinigen’s NaviGATE initiative is a commendable effort to empower rare disease patient advocacy groups, bridging the knowledge gap and enabling them to engage effectively with pharmaceutical industry stakeholders. This initiative aligns with the broader goal of improving access to medicines and advancing rare disease research.