More visibility for neurofibromatosis, reaching a global audience! In these times of uncertainty due to Covid-19, the voice of the patient has never been more important. In this article in the International Business Times by Children’s Tumor Foundation President, Annette Bakker, PhD, she outlines how the current environment has accelerated ‘patient-directed care’, whereby patients take charge of their care and together with doctors make decisions about the best course of action. This advancement has the potential to impact all diseases, including neurofibromatosis (NF). Technology is enabling both diagnosis and care to take place outside of traditional settings, but hospital limitations continue to restrict access. It’s imperative that lawmakers, regulators, healthcare professionals and patients themselves work to ensure that what we’ve learned in this unique moment can transform health care for the better in the future. Click here to read the article.
