LGMD Core Dataset Project Manager
Sonia has a longstanding experience in Project Management for neuromuscular diseases registries.
Sonia is a nurse by training, but after 15 years working as a nurse practitioner in different specialities, moved to the rare diseases field coordinating the Spanish Neuromuscular Disease registry funded by the biomedical research network centre for rare diseases (CIBERER).
Sonia has participated in the design, development and implementation of registries working with different stakeholders including patient associations and pharma companies. She has also developed the Sant Pau neuromuscular diseases unit database which is a platform that integrates healthcare, research, clinical and laboratory data.
In the last three years Sonia has expanded her role within CIBERER and has taken on the development of policies for rare diseases, as well as coordinating a national working group for rare disease registries.
As leisure activities, Sonia enjoys leisure activities, especially outdoor sports, nature, and loves hiking. Sonia loves animals and enjoys life with her pets; two cats and a dog.
Sonia will be the project manager responsible for establishing, managing and coordinating the LGMD Initial Core Dataset Project across the TREAT-NMD Registry Network.