Many in our APS type 1 community are affected by hypoparathyroidism. On March 5th, Julia Richardson joined about a dozen other patients, to share the impact of hypoparathyroidism and treatment at an Externally Led Patient Focused Drug Development (EL-PFDD) meeting. The goal of the meeting was to share the effects of the disease and the lack of many treatment options on the lives of patients to the FDA, researchers, pharmaceutical companies, and clinicians. It was important to highlight the need for more targeted treatment options.
Dr. Naomi Lowy, of the FDA, responded after the meeting, saying “It left me quite affected I have to tell you. It was a very well-run meeting and hearing the level of suffering was quite impactful.”
We look forward to more opportunities to partner with others and encourage more research and drug development in areas that affect our community.
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