A patient-driven rare disease research network for all

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Together, we revolutionise rare disease research

OUR AIM

Turning research on its head!  We’re reshaping research; building teams with patients and advocates as equal partners alongside researchers, healthcare professionals, and industry representatives.  Through our inclusive, community-driven, cross-sector platform, we’re fostering new relationships, empowering seldom-heard voices, and delivering high-quality patient-centred research.

HOW

The RDRN platform showcases community research priorities. It upskills patient groups in developing their research projects, from conception through publication, helping them navigate their research journey. It’s an inclusive, supportive networking hub for everyone interested in rare disease research. A unique match-making feature facilitates cross-sector partnerships and co-creation inspired by research interests, methodologies, or shared objectives.

89
people on the platform
41
connections made
7
live research questions

“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

From Patients to Pioneers

The Story Behind the Rare Disease Research Revolution In the world of rare disease research, the traditional model has long been investigator-led, with researchers and institutions setting the agenda. But what if we turned that model on its head? What if the people who live with these conditions—the patients themselves—could decide the research questions, lead […]

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Introducing the Rare Disease Research Network

A Revolutionary Cross-sector Approach to Rare Disease Research In a world where more than 300 million people live with over 11,000 rare diseases, research that truly meets the needs of patients is paramount. Unfortunately, the journey to effective treatment for rare diseases has often been marred by prolonged diagnostic delays, limited treatment options, and insufficient […]

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A Mothers’ Journey Into Research

Advice from Mel Dixon from Cure DHDDS When two of her three children were diagnosed with an ultra-rare genetic condition called DHDDS, Mel was told something no parent ever wants to hear: there was no treatment, little research, and no established pathway to understand the disease better. This genetic mutation, often neurodegenerative, is characterised by […]

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