Family days and events are social events held for patients and are the cornerstone of many rare disease patient groups. These events give an opportunity for the community to come together and get to know each other. Family days and events are generally organised by patient groups and are advertised on patient groups websites or through social media groups. Medical professionals invited to attend these events have the chance to interact with patients outside of the hospital or clinic, get to know them better and discuss the topics that are important to patients. Involving medical professionals can allow:

  • Patients to develop a connection with medical professionals: Meeting clinicians in less formal settings can help build trust, and help patients feel more connected to the people responsible for their medical care.
  • Medical education for both patients and medical professionals: Information can be exchanged in a less formal setting, helping clinicians and patients to understand each other’s perspectives.
  • Professional development: Meeting patient families in a non-medical setting can be very rewarding for medical professionals, helping them see the importance of the work they do.