The SKIN ePAG is developing Patient Journeys , visual testimonies that reflect the natural history/needs of patients and their families for a specific rare disease. They represent the collective perspective on the burden of the disease and the needs of people with first-hand experience of living with a rare skin disease.
It aim to :
- Engage the wider patient community to consolidate common needs for a specific rare disease
- Engage in a discussion with the clinicians to highlight the different (unmet) needs of a specific rare disease, both medical and psychological, so the clinicians can respond to these needs
- Keep in mind both the professional and patient are experts