@article{Ekins2018, author = "Sean Ekins and Ethan Perlstein", title = "{Doing it All - How Families are Reshaping Rare Disease Research}", year = "2018", month = "8", url = "https://figshare.com/articles/preprint/Doing_it_All_-_How_Families_are_Reshaping_Rare_Disease_Research/6990872", doi = "10.6084/m9.figshare.6990872.v1" }