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Introduction Various orofacial manifestations may significantly impact on quality of life in patients with systemic sclerosis (SSc), yet are little researched, and without dedicated guidelines to inform management. Our aim was to understand the orofacial needs of patients with SSc to inform the future research agenda.Material and Methods A dedicated international survey (38 questions) comprised of demographic data, oral hygiene habits and general dental history, targeted questions specific to orofacial manifestations of SSc. We also asked questions to understand patients’ confidence in their treating teams, and perceived unmet needs.Results We included responses from 334 individuals with SSc. Most resided in North America (68%). Patient demographics were in keeping with the known epidemiology of SSc (female 95%, mean (SD) age of over 55 years, and most were white race (86.5%).The majority of patients were registered with a dentist (90%) and kept regular visits at 6 monthly intervals (64.3%). Most (71%) reported they brushed their teeth at least twice a day, but only half (49%) used interdental aims daily. A significant proportion found brushing their teeth difficult, either because of mouth opening (76.7%) or loss of dexterity (65.8%).The most common reported orofacial problems were restricted mouth opening (75.4%), dry mouth (80.8%), facial appearance (76%), dysphagia (71.3%), and the fitting of dentures (69.8% out of a total of 43 denture users). An increase in dental extractions (12.6%) and decline in periodontal health (16.3%) after their diagnosis was noted. The majority (75%) of patients felt their oral health was deteriorating because of the medication needed to manage their condition.Confidence in their dentists’ knowledge of SSc and its orofacial sequalae was lacking (61.7%) and most (69.7%) patients were equally comfortable asking their treating rheumatologists for advice. Half of patients felt that a significant part of their oral health was neglected (55.7%); mostly involving periodontal health (50.7%), enamel wear (35%), and dental caries (27.7%).Conclusions Orofacial manifestations affect 80% of patients with SSc and the patient perspective is often missed. Patients face significant challenges such as periodontal health issues and caries, sometimes resulting in tooth loss, which are reported to occur more often after their diagnosis. Orofacial health issues are often overlooked by clinicians involved in SSc patient care. Taken together, there is a need for an early combined multidisciplinary dental and medical team management approach, which could promote and improve orofacial outcomes for patients with SSc.