Patient journeys
In the context of the ERN SKIN (European Reference Network, network centres for rare diseases), patients grouped as ePAGS (European Patient Advocacy Groups) collaborate with health care professionals. This collaboration led to the development of Patient Pathways, Patient Journeys. These are 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.
Their aims are to:
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Engage the wider patient community to consolidate common needs for a specific rare disease
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Engage in a discussion with clinicians to highlight the different (unmet) needs of a specific rare disease, both medical and psychological, so clinicians can respond to these needs
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Keep in mind that both the professional and the patient are experts
The following provide links to the outputs of the ePAGS for the specific PEM rare diseases.
Pemphigus Vulgaris
Visual
Summary
Full Text
Click on a logo to download a document
Mucous Membrane Pemphigoid
Visual
Summary
Full Text
The ePAGS documents are due soon
Bullous Pemphigoid
Visual
Summary
Full Text
The ePAGS documents are due soon