Why Join

A Research Network for All

The Rare Disease Research Network (RDRN) is an inclusive space for anyone passionate about rare disease research. We champion patient-driven initiatives, fostering dynamic partnerships between individuals, organisations, researchers, health and social care professionals, industry, and funders. By placing patients at the forefront, we empower them to drive research and form impactful research collaborations that matter.

RDRN offers something for everyone. Whether you’re a patient with valuable insights keen to showcase your research ideas, a researcher eager to align with patient priorities, or an industry partner seeking to streamline innovation, RDRN connects you with a diverse, expert community. Together, we revolutionise rare disease research.

Individual

The Rare Disease Research Network (RDRN) is an inclusive platform that supports individuals in forming like-minded teams, providing the chance to collaborate, innovate, and drive meaningful change. Whether you aim to align your work with patient-driven priorities, pioneer your own research, or develop solutions for the rare disease community, RDRN offers the resources, mentorship, and collaboration opportunities you need. Through partnerships and knowledge exchange, the platform empowers you to create research that truly reflects the needs of those with lived experience, revolutionising rare disease research through patient-driven initiatives.

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Organisation

Let the Rare Disease Research Network (RDRN) enhance your organisation’s impact and visibility by helping transform patient priorities into feasible research projects. Access a broad network dedicated to rare diseases. Organisations can strengthen their patient and public involvement (PPI) efforts by co-creating patient-driven research with other like-minded RDRN members. Gain insights into cutting-edge developments, consult with engaged community members, learn from peer organisations, and upskill your team on co-production methods. By joining RDRN, organisations can engage with diverse stakeholders, mentor aspiring researchers, and contribute to the vital field of rare disease research, ultimately amplifying their collective efforts.

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Research

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.

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Healthcare

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.

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Industry

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.

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Funder

The future of rare disease research lies in a patient-driven approach. With over 300 million people affected by more than 11,000 rare diseases worldwide, rare conditions remain a vastly underserved area—95% of which have no FDA-approved treatment. Patients, especially those with lived experience, possess invaluable insights into their conditions and are uniquely motivated to advance research. Given that 30% of those affected are children, it is essential to involve patients from the outset to ensure research is relevant, effective, and directly aligned with the needs of end users. The Rare Disease Research Network (RDRN) is dedicated to fostering acceptance, education, and growth in co-created research across the UK and beyond, addressing key challenges such as a lack of treatment options and prolonged diagnostic journeys.

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“This new online network will allow more rare diseases (and the patient groups supporting their communities) to be seen and heard in the research space, creating a more equitable field for all. This model turns the current approach to identifying new research opportunities on its head. The potential to open up collaboration between researchers, the biopharma industry and patient groups is huge…who knows where this may lead?”

Allison Watson, CEO, Ring 20 Research and Support CIO