“Non‐profit organizations, like the Foundation Fighting Blindness, can play critical roles in helping to catalyze and de‐risk drug development in rare disease spaces like the IRD by a variety of strategies that include incentivizing clinician scientists to commit to these fields, supporting early preclinical and clinical work, sponsoring natural history studies that share data widely, and leveraged investments supporting key proof of concept studies in humans.”
Download the PDF version: Implementation of a registry and open access genetic testing.pdf
or read on the Foundation Fighting Blindness website here: https://onlinelibrary.wiley.com/doi/epdf/10.1002/ajmg.c.31825