Do you know what matters most to the patients you’re hoping to help? The Rare Disease Research Network (RDRN) offers a unique opportunity for industry partners across sectors—biotechnology, pharmaceutical companies, medical technology firms, and start-ups—to invest in patient-driven research. By involving patients from the very beginning, RDRN ensures that innovations in diagnostics, genetic analysis, and medical devices align with patient priorities. This patient-centred approach saves time, reduces costs, and improves trial recruitment and adherence while ensuring that treatments meet real-world needs.
RDRN helps industry partners develop materials and communications in a language and format that works for patients, ensuring they only need to be consulted once, and it’s done right. The platform also fosters collaboration with patients, carers, and clinical professionals, driving better outcomes and ensuring companies consider how to report back and give back to patients who add value to their work.
Supporting RDRN positions companies as leaders in patient and public involvement (PPI), an increasingly essential element in gaining market authorisation. By using RDRN’s resources on co-production and patient-driven research, companies can shape their PPI strategy effectively. Entrepreneurs and start-ups benefit from early-stage testing and insights, refining product-market fit and accelerating innovation. Furthermore, companies can bolster their corporate social responsibility by contributing your time as a mentor, and more.
Find engaged patients and patient groups.
Improve outcomes for those touched by rare conditions.
Align ideas, treatments and innovations with patient priorities.
Join the RDRN for a unique and exciting opportunity to invest in the future of rare disease research. By involving patients from the very start of research development, you’ll save valuable time, costs, and resources by ensuring your work aligns with patient priorities. Our platform connects you with a multi-stakeholder community where you can find not only engaged patients and patient groups but also carers and professionals involved in providing clinical care. Collaborating with these groups will ensure your ideas, treatments, and innovations are relevant to end-users, improving trial recruitment, and adhesion, and driving better uptake. RDRN de-risks patient-driven initiatives, identifying in-demand patient priorities to encourage safe investment and returns desired by both patients and clinicians.
Investing in impactful rare disease research through RDRN allows you to build trusted relationships and heighten your patient engagement and retention. You can share your expertise, empowering patients while advancing your company’s patient and public involvement (PPI) profile. You’ll have access to vital resources on co-production and patient-driven research, positioning your organisation as a PPI leader. Spread the word across your networks and institutions, and be at the forefront of ethical, patient-driven research that responds to real-world needs while boosting your company’s impact.
Furthermore, RDRN presents excellent opportunities to enhance your corporate social responsibility by contributing your time as a mentor, assisting with resource development, or through any other ideas you may have. Log onto the platform to see these opportunities, or to discuss collaborating directly, please contact [email protected].
JoinJoining RDRN offers significant benefits for industry partners across three critical areas of research and development. For pharmaceutical companies focused on new drug development or drug repositioning, RDRN ensures that treatments align with patient priorities from the start, improving trial recruitment, and adherence, and ultimately saving time and resources. Research labs and genetic testing companies involved in screening and diagnostics can leverage patient insights to refine their technologies, ensuring diagnostic tools and genetic analyses are relevant, accurate, and patient-friendly. By participating in RDRN, companies across these sectors can foster more effective patient engagement, enhance their research impact, and contribute to innovations that truly make a difference in rare disease care.
The RDRN offers entrepreneurs and start-up companies the unique opportunity to collaborate with an engaged rare disease community from the outset. By co-creating ideas with patients and those with expert lived experience, you can ensure your innovations align with real-world needs, while early-stage testing with this motivated community accelerates development, saving time and resources. RDRN connects you with a diverse cross-sector network that can provide valuable insights to refine your innovations. This collaboration helps optimise product-market fit, de-risk your development process, and gives you a competitive edge in delivering patient-centred solutions for rare diseases, whilst supporting a community underserved in research.
JoinRDRN was shaped by the rare disease community, focusing on a patient-driven approach. As we enter phase two of the project, RDRN’s goal is to ensure the platform works for your organisation. Expanding our services to meet the needs of industry partners is a key focus, and we are committed to building a platform that aligns with your priorities.
We are also excited to announce that, thanks to the Cambridge Public Engagement Starter Fund funding, we will conduct targeted engagement activities with industry to shape future collaborations. This includes a series of four webinars aimed at understanding your needs and motivations, which will focus on:
We hope RDRN will become a mutually beneficial space for all stakeholders. Additionally, we will be hosting events at public forums such as RareSUMMIT25. Sign up for our newsletter to stay informed about these upcoming opportunities.
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