Building networks
Sharing experiences helps people connect and deepens understanding. Living with a rare disease can be scary, overwhelming and isolating. We empower patients and families to share their experiences with each other and with those professionals whose expertise could help improve diagnosis, treatment and care. We’re building local community and global industry networks because we believe that stakeholder interaction is a catalyst for progress.
Connecting & supporting families
Sharing experiences helps people connect and deepens understanding. Families tell us that living with a rare disease can be scary, overwhelming and isolating.
We host a supportive, regional community of children, young people and families affected by different rare conditions. Families share their experiences and enjoy a range of local, regular, adaptive and inclusive activities.
Many of the families support CamRARE to educate others to help improve diagnosis, care and treatments. They share information about their child’s condition and their daily challenges with scientists, healthcare professionals, the pharma industry, policy-makers, the media and online platforms.
Together, we’re making rare conditions an everyday conversation.
Ideas exchange and collaboration
Exchanging ideas, stakeholder interaction and working collaboratively help catalyse rapid progress in improving treatments and care for those affected by rare conditions.
Our Companies Forum is a progressive, trusted, neutral space where life sciences and industry stakeholders come together to accelerate progress in rare disease care.
Too many rare disease treatments and innovations stall due to fragmented systems, limited data, and misaligned priorities. The Forum helps to build bridges between industry, patients, regulators, and researchers, encourages collaboration in a traditionally competitive space, centres the patient voice in research and development, influences policy and practice through collective insight and fosters knowledge-sharing and long-term impact through partnership.
Turning research on its head
RDRN was co-created by CamRARE, Patient Led Research Hub, and members of the UK rare disease community with the aim of turning research on its head!
We’re building teams with patient communities as equal partners alongside researchers, healthcare professionals, and industry representatives. Through our inclusive, community-driven, cross-sector platform, we aim to de-risk patient-driven and co-produced research.
RDRN is a networking hub for everyone. We help patient communities navigate their research journey, supporting them from the early stages of priority setting through to funding application and dissemination. We showcase ideas and match-make multi-stakeholder teams, connecting members with shared objectives to co-produce new rare disease research.