The Rare Disease Research Network (RDRN) brings together an exceptionally motivated and engaged patient community, ready to drive research that will address their healthcare priorities. Will you support them? By sharing your expertise, you can help empower patients to refine their own research ideas and develop feasible studies, advancing both your professional development and the future of rare disease research. By joining RDRN you’ll also have the opportunity to include patient groups from the outset of your own research, building impactful studies enriched with lived experience insights, ensuring your work is more ethical, responsive, and grounded in real-world needs.
New to co-production? There is no single methodology – it’s an adaptable approach tailored to the needs of all involved stakeholders. Whether you’re just beginning or are well-established in your research career, RDRN provides all the networking opportunities, resources, and mentorship you need to thrive in patient-driven research. Enhance your Patient and Public Involvement (PPI) knowledge and gain the tools and confidence to align your research with patient-driven priorities, shaping the future of rare disease research.
Collaborate with patient groups to co-create impactful research.
Refine your own studies with unique lived experience insights.
Enhance your PPI skills.
By joining the RDRN, you’ll hear directly from rare disease communities about their innovative research ideas and healthcare needs, allowing you to co-create impactful research that can transform lives. Collaborate with patient groups and find new cross-sector partners to ensure your research team has all the expertise you need to align with real-world patient priorities. Weaving a unique lived experience narrative throughout your research makes your research more ethical, benefits funding applications, and supports better recruitment, adherence, and dissemination. Through RDRN, you’ll connect with diverse stakeholders, access co-production resources, and support patients develop their own research ideas—empowering both your professional growth and the future of rare disease research.
JoinWant to stand out in the rare disease space, gaining visibility and creating impactful research? Join the patient-driven revolution with RDRN. Hear directly from rare disease communities about their innovative research ideas and needs, while accessing the latest resources and research updates in the field. Align your work with patient-driven priorities to enhance your Patient and Public Involvement (PPI) experience, creating more relevant, impactful research informed by lived experiences. RDRN offers peer-to-peer support, valuable networking opportunities, and access to diverse stakeholders, empowering you to lead in patient-driven rare disease research. Become a pioneering research group that champions patient-driven engagement and helps shape the future of rare disease research.
JoinThe RDRN offers you, as a student, PhD candidate, or early-career researcher, a valuable chance to enhance your Patient and Public Involvement (PPI) experience by aligning your work with patient-driven priorities. You can create more impactful, relevant research while gaining unique lived experience insights from a community often underrepresented in research. Engaging with patients and those with lived experience enriches your work, making it more ethical and responsive to real-world needs. Through RDRN, you can collaborate with diverse stakeholders, access mentorship, and tap into valuable resources and networking opportunities. This not only strengthens your professional growth but also empowers you to deliver impactful rare disease research through meaningful, patient-driven engagement.
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