Over 95% of 11,000 rare diseases have no FDA-approved treatment.
We want to change that by creating an inclusive space for anyone passionate about rare disease research.
We de-risk patient-driven research by supporting communities along their research journey.
We de-risk investigator-led co-production by facilitating upstream partnerships for researchers and innovators to connect with patients, advocates, and healthcare professionals.
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.
Read More JoinEnhance your organisation’s impact and visibility by helping transform patient priorities into feasible research projects. Access a broad network of like-minded people dedicated to rare diseases and form new, cross-sector partnerships, sharing knowledge, expertise, and amplifying the patient voice.
Read More JoinHelp empower patient communities refine their own research ideas and develop feasible studies. Enhance your own research by including motivated patient groups from the outset, building impactful studies enriched with lived experience insights, ensuring your work is more ethical, responsive, and grounded in real-world needs.
Read More JoinShare your professional insight with a motivated, cross-sector network to drive new rare disease research centred on real-world needs. Advocate for patient communities and amplify their voice by helping ensure their research outputs can be readily implemented within clinical care. Broaden your expertise and learn how co-production skills can translate into your workplace.
Read More JoinShowcase your corporate responsibility and learn what matters most to the patients you’re aiming to help. By providing a safe space to engage with patient communities from the outset, RDRN helps ensure your innovations align with patient priorities. Our co-creation approach saves time, reduces costs, and improves trial recruitment and adherence while ensuring that treatments meet real-world needs.
Read More JoinCollaborate with a diverse cross-sector network to ensure commissioned calls reflect the needs of investigators and end-users. Rare disease research is hard and resources are limited; ensure your funding supports inclusive and impactful research by facilitating upstream co-creation, connecting investigators with motivated patient communities.
Read More Join“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
