OBJECTIVE: The restructuring of healthcare provision for the coronavirus disease 2019 (COVID-19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews. RESULTS: The lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID-19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients. DISCUSSION: Access problems experienced by patients during the COVID-19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease-specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision-making processes during times of health crises. PUBLIC CONTRIBUTION: Representatives of patient organisations participated in the interviews.