Building the rare community
We are uniting patients, doctors and industry to accelerate treatment development and ensure no patients are left behind
Rare diseases are incredibly complex, under researched and insufficiently funded. Delivering new treatments to a dispersed, relatively small and poorly understood population is a momentous challenge and, unfortunately, those involved in the process too often work without consideration of patients’ perspectives.
In order for the rare disease community to progress and meet its goals, all stakeholders must work together with patients in mind. These stakeholders include patient groups, families, students, clinicians, researchers and the life science industry – and when working in collaboration, they are significantly better than the sum of their parts.
Findacure brings all of these groups together to promote collaboration and, ultimately, build a cohesive rare disease community. In doing so, we are providing opportunities for rare disease patient groups to make the connections they need to accomplish their own mission, as well as giving researchers the motivation to engage patients in their work.
Throughout our community building projects, we help to:
- Provide a forum for rare stakeholders to meet and communicate freely
- Share innovative examples of progress within the rare disease field
- Emphasise the necessity to engage patients in the research process
- Ensure patients feel their voice is valued
- Transform the patient journey by encouraging young medics to ‘think rare’ later in their careers
Find out more about our community building projects:
Marking Rare Disease Day, our annual conference explores the latest developments rare disease research, namely in drug repurposing.
Our Showcase networking events highlight and celebrate rare disease progress in local regions. Look out for one coming to a city near you!
Our ‘Student Voice’ essay competition encourages the researchers and medics of the future to engage with rare disease issues.
Check out our information books for patient groups, focus group reports, scientific articles we have contributed to, and our annual impact reports.