03/03/2026
To mark Rare Disease Day 2026, members of our Patient and Public Sounding Board have shared their own experience of living with rare disease.
Liz was diagnosed with scleroderma in recent years, and before her diagnosis enjoyed an active life of socialising, hosting parties and exercising three times a week. Life looks very different for Liz now, as she manages her symptoms daily.
Liz emphasises the importance of GPs and other practitioners understanding rare disease and how this would aid in earlier diagnosis. She also stresses the significance of community, both online and offline, where those living with rare disease can share their experience and meet others going through similar.
Due to a lack of anything of its type in Wales being available, Liz was asked to set up Wales Wide Scleroderma Support, a network which facilitates connection between those living with the condition and puts them in touch with other networks where there may be a cross over in individuals’ symptoms.
Watch Liz’s full story here: https://orlo.uk/mOeuf
Wales Wide Scleroderma Support
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