As individuals and institutions working directly with those affected by rare conditions, you play a vital role in identifying their unmet needs and shaping policies that impact their lives. You have a wealth of knowledge to share in research – why not collaborate directly to make a greater impact? Empower rare disease patients to take an active role in research by joining the Rare Disease Research Network (RDRN). RDRN offers a patient-driven platform for cross-sector collaboration between health and social care professionals, researchers, industry, and motivated patients, supporting innovative, inclusive research that is responsive to real-world needs. Share your expertise, consult directly with patient communities, and become an ambassador for the future of patient-driven rare disease research.
Empower rare disease patients to take an active role in research.
Share your expertise.
Become an ambassador for the patient-driven research movement.
Health and social care professionals play a vital role in supporting rare disease patients, who often face daily challenges and frustrations and are underserved in research. By joining RDRN’s vibrant network and encouraging your patients to participate, you can help empower them to actively shape research that directly impacts their lives. RDRN offers a unique, patient-driven platform where researchers, industry, and healthcare professionals collaborate with motivated individuals eager to make a difference, yet may have found it difficult to engage in traditional investigator-led research. Sharing your expertise in healthcare can help guide patients and families to co-create meaningful research, ultimately improving clinical outcomes while enhancing your own professional development. Become an ambassador for this patient-driven movement and drive transformative change in rare disease research.
JoinHealth and social care institutions play a pivotal role in improving outcomes for rare disease patients, who often face daily challenges and are underserved in research. By joining RDRN’s dynamic network and encouraging staff and patient participation, your institution can help empower individuals to shape research that directly affects their care. This patient-driven platform allows researchers, industry, and health professionals to collaborate with motivated individuals, leading to more efficient care, better patient outcomes, and cost savings. Training your staff to engage with RDRN enhances their involvement in research, boosting morale and contributing to professional growth. Moreover, it strengthens your institution’s research profile by fostering real-world, impactful research that addresses the needs of those you serve.
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 health and social care 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 health and social care professionals 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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