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.
Despite some hesitation to fully embrace patient involvement, patient-driven research has already demonstrated its ability to produce meaningful, impactful outcomes. 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, which can take over a decade for some individuals.
The RDRN is proud to have received support from the UK’s National Institute for Health and Care Research (NIHR) through a 2023 Public Partnerships Programme Development Grant, affirming the value of amplifying patient voices in research. Continued funding is essential to sustaining this movement and driving forward impactful projects. We invite funders to join us, not just as financial backers but as active partners in this journey. Through our platform, funders can collaborate with patient communities, gain insights into their research priorities, and identify strategic opportunities for innovation.
Invest in the future of patient-driven rare disease research.
Amplify the patient voice in research.
Shape your policies by consulting directly with patients.
Appropriate funding is a significant barrier for many motivated teams. Corporate sponsorship can be a crucial lifeline, supporting and upskilling patient groups, and helping them along their journey to advance patient-driven rare disease research. Beyond traditional grant funding, patient groups often need additional support to:
Your investment can support critical, behind-the-scenes elements required to develop and transform innovative research ideas into impactful outcomes. While corporate sponsors may not directly fund peer-reviewed research, their contributions can empower patient groups to navigate the research process without barriers confidently. By joining the RDRN platform and investing in these exceptional projects, corporate sponsors can make a profound impact on the future of rare disease research, bolstering their PPI and philanthropic portfolios.
If you’re interested in offering philanthropic support or sponsorship to RDRN directly, we warmly invite you to contact us at [email protected].
JoinRDRN offers an inspiring opportunity for those involved in creating research grant calls to revolutionise the way grants support patient-driven research. Traditional funding structures often fall short in fostering meaningful patient involvement, but with RDRN, you can help transform this landscape. By joining the platform, you can learn how to tailor your calls to encourage the involvement of patient groups from the outset of ideas generation, ensuring that research addresses real patient priorities, unmet needs, and underserved communities—well beyond standard PPI consultation. The platform also helps funders create more inclusive application processes, making it easier for patient groups to lead or co-lead projects, even without an academic or clinical background. RDRN offers a unique opportunity to consult directly with patient groups on the platform, enabling you, as a funder, to shape grant calls and policies that truly support patient-driven research, making an impactful investment in the future of rare disease innovation.
JoinSupporting the infrastructure of RDRN is a unique opportunity to dismantle the silos that often impede progress in rare disease research. We offer two key ways for funders to contribute to our initiative:
Our patients and cross-sector teams are poised to drive meaningful change. Will you join us in supporting them? By investing in RDRN’s infrastructure or one of the transformative projects we host, you will help propel the future of rare disease research.
If you’re interested in providing direct infrastructural support to RDRN, we warmly invite you to contact us at [email protected].
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