**6. Conclusion**

Rare disease research continues to be hampered by lack of academic and commercial incentives and practical barriers to conducting research involving small, geographically dispersed populations. This results in limited understanding of rare diseases, delayed diagnoses and a lack of therapeutic options for patients. There is hope that international biobank networks and data sharing can improve care and advance research into rare disease. Research ethics concerns about protecting patient privacy, enabling individuals to make informed decisions, and involving patients in governance deserve concerted and nuanced attention in these contexts. Standard governance approaches may need to be re-calibrated for rare disease contexts, given the necessity of openness, high unmet need, and the willingness of many rare disease patients to contribute to biobanks and databases, despite minor privacy risks. This is not to say that rare patients do not care about privacy or about being offered meaningful choices. Involving patients in the governance of biobanks and data sharing, while appropriately highlighting the importance of international collaboration, can help to ensure these activities ultimately improve the prospects of those with rare disease.
