Lysogene is a growing biopharmaceutical company developing gene therapy for rare neurodegenerative diseases. The rare disease environment encourages people to exchange ideas, to seek challenges, and to achieve their personal goals. Small patient numbers and the heterogeneity of rare diseases, combined with the lack of knowledge, information and training about these conditions results in delays in correct diagnosis, care and treatment. At Lysogene we believe in sharing our experience to help further research into rare diseases and so improve public health globally. We are particularly interested in the comparability and accessibility of data through RD-Connect.