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Patient organisation-led initiatives can play an important role in raising awareness about Raynaud’s phenomenon and encourage earlier healthcare utilisation for high-risk groups

Raynaud’s phenomenon (RP) manifests as episodic vasospasm of the extremities (hands and feet) in response to cold exposure. RP can be primary (idiopathic) or secondary to underlying disease such as systemic sclerosis (SSc). Attacks of RP are often associated with digital colour changes reflecting local tissue perfusion and oxygenation. RP results in pain, numbness, impaired function and reduced quality of life.1 2 The obliterative vasculopathy of SSc can result in digital ulceration. Diagnostic delay of secondary RP remains a major unmet need. The time between the onset of RP and emergence of the first non-RP symptom can be over 5 years.3 This contributes to delay in diagnosis; with >25% of women not diagnosed with SSc for 10 years after the emergence of RP.4 

Against this background, Scleroderma Raynaud’s UK (SRUK) led an initiative to devise …