Objective: Focus groups were convened to explore the concerns, fears, hopes and expectations of rare disease patients about linking and sharing data through an international, collaborative platform. This work is part of RD Connect, the integrated platform connecting resources for rare disease research. Method: Fifty-two participants from fifteen different countries took part - the majority were rare disease patients and/or the parents of children with a rare condition. The groups were exploratory by design and used scenario-based discussion to allow participants to raise issues of their own volition. Results: Focus group participants discussed two scenarios about historical consents, and about health and genomic data being widely shared outside of a local care provider. Focus group members were positively disposed towards research and towards allowing data and biosamples to be shared internationally. Findings show that, while rare disease patients are willing for their/their children’s data to be shared internationally, they would first seek specific information about curatorship and governance as well as the limitations on access and details about security measures. Participants broadly favoured systems run by public organisations such as universities, hospitals and clinics, rather than those kept by private companies. The notion of genetic exceptionalism was widely present and participants viewed data about genetics as having significance over and above other types of data about an individual. This was expressed as recognition that DNA analyses could reveal differences from society’s norms for those with a genetic condition and a fear that knowledge of this has the potential to be used for maleficence or discriminatory purposes. Participants were therefore keen to retain autonomy, for themselves, for their children, and for the group they might represent, by being given the opportunity to consent or re-consent if research purposes change. Many rare disease patients and their families have prolonged contact with research teams and there are strong notions in the findings of a duty to participate in order to aid research progress. It seems that participants expect clinicians and researchers to have concordant duties, including consulting with the patient/family if there is a possibility that new research moves beyond the bounds of the original informed consent. This extends to recontacting children when they come of age, which participants viewed as vital to the preservation of the child-now-adult’s autonomy. Conclusion: The pernicious effects of discrimination are real and recent experiences for many people with rare diseases and their families and while genetic discrimination is banned in most of the countries that our participants are from, it is not always present in legislation or treated in the same manner throughout the world. It is therefore important for rare disease patients and families to mitigate, as far as possible, against uncertainties which might lead to their data “getting into the wrong hands”. Participants have high levels of trust in public institutions and expect such organisations to protect against the possibility of participation in a global database leading to disadvantage. In addition individuals’ levels of trust and attitudes to risk differed and while a large majority of the participants were concerned about threats to privacy and autonomy, the scale and scope of these concerns varied between individuals. Individuals’ approaches were often bounded culturally and this included: politically and socially mediated practices and norms in the country in which they lived; the characteristics of the rare disease that they and/or their child had; and individual experiences with research. It is important for the curators of research systems to recognise therefore that the rare disease patient/family experience is not a homogenous one and policies around data sharing and privacy should take this into account. In addition, all the participants were of the view that the inclusion of patient organisations the ongoing governance of a global platform like RD Connect is vital to reassure participants their concerns have an adequate level of recognition.