Each quarter, we highlight a council member, an advocate or policy maker, an investigator, or clinical care provider. This quarter we are featuring one of the Utah RDAC members, Dr. Lorenzo Botto. “My career has taken me across several countries and disciplines, shaped by the mentors, patients, and families I have learned from along the […]
We hope to strengthen connections in the community through personal stories that describe barriers or challenges that a rare disease patient or family has encountered. We will evaluate how the barrier was cleared. If the challenge has not been resolved, we will explore what is needed to solve that problem. This quarter, we will describe […]
Rare Disease Day raises awareness for rare diseases, highlighting progress in diagnosis and treatment while uniting patients, caregivers, and industry leaders. […]