This is a qualitative study in patients with nystagmus identified through regional clinics, charity events and the Royal National Institute of Blind People (RNIB). Two hundred and fifty-one participants were identified, with 184 respondents included in the study. Fifty-six percent were certificate of visual impairment (CVI) registered; 62% were aware of nystagmus charities and / or support groups (with a median ‘helpfulness rating’ of 3.5 on 5); only 23% had been informed of these groups by medical professionals. The preferred route of contact for nystagmus support was social media and internet groups, and this is much more valued that face-to-face support from medical professionals. This study highlights that the patients’ awareness of support groups and charities was lower than expected and in some cases may be due to lack of signposting by medical teams. The study suggests that more robust guidelines or pathways may be required, and that social media and other internet resources are likely to be instrumental in this aspect of clinical care.