We transform the way patient groups work, giving them the skills and confidence they need to make a bigger difference to patients’ lives

When patients or parents receive a rare diagnosis, they can feel isolated, uninformed, and overwhelmed. Patient groups – organisations set up to represent and support patients and families in all issues related to a specific condition – are one of the few places they can turn to for reassurance and credible information.

Unfortunately, only around half of all rare diseases actually have a support group available, and those that do exist are normally small and voluntary, with limited reach and impact. This leaves many patients and parents with a stark choice: remain isolated, or start their own community. With little experience in healthcare or the charity sector, this is a challenge, but tackling this while managing a rare condition can feel insurmountable.

Findacure runs a series of training programmes to help these motivated and passionate individuals become effective advocates for their condition. In particular, we help them:

• Build their own support group or charity
• Raise awareness about their rare condition
• Get research ready
• Provide support to patients and families

By giving patient groups the tools, confidence and connections they need, they can become the signpost patients desperately deserve, the shoulder parents can cry on, and valuable partners in research. Together, we transform the lives of rare disease patients.

 

Find out more about our four training projects: