E61: RARE² Rare Disease Day Webinar

Join A Cure in Sight and Dr. Dalvin and Dr. Moser for this special Rare Disease Day Webinar, recorded live on Feb 28, 2023.

Are you RARE²? Ocular Melanoma affects 6 per million people each year. Of those diagnosed, children and minority communities (people of color, indigenous peoples, etc.) make up an even smaller percentage of the patient population. 

Dr. Lauren Dalvin and Dr. Justin Moser, who attended medical school together, were part of a discussion on the importance of awareness for rare diseases, and how they got involved in the work of ocular melanoma specifically. 

Dr. Lauren A. Dalvin is a full-time Ocular Oncologist and Associate Professor of Ophthalmology with a joint appointment in Medical Oncology at Mayo Clinic, Rochester, MN.

Dr. Justin Moser is a medical oncologist and hematologist and associate clinical investigator at HonorHealth Research Institute. He treats patients in the area with uveal melanoma and other rare diseases. 

They discuss questions such as: 

What is it like being a physician of those with rare diseases?

Why is a day like rare disease day an important day to spread awareness?

Why did you get into ocular melanoma? What drew you as a physician to rare disease?

How do you see the rare disease landscape changing in the future?

What are registries and biobanks? Why are they important for rare diseases? PLUG FOR INSIGHT REGISTRY , living library, what is a bio bank? 

How often do you treat someone in a minatory group (like children, people of color, potential obstacles they face)?

How do you reassure a patient with rare diseases that they will receive good care in your practice?

This webinar is made possible by contributions from the EveryLife Foundation for Rare Diseases. The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.