Advocacy in the Rare Disease Community with Ashley Yee, MSW

This talk will share information about Global Genes and will provide the landscape of the rare disease population. The talk will also discuss how advocacy is defined and where is advocacy needed in the rare disease community; and how as a patient or advocate, you can have a part in all of this. Finally, the talk will present the importance of taking an active role and what it could mean for the patients and their disease community.

Ashley Yee, MSW | Presenter

Ashley Yee is the current Senior Manager of Community Education Programs in the Patient Engagement department at Global Genes. She has been with Global Genes for the last two years and comes to Global Genes with a Master in Social Work from the University of Southern California. With years of experience in the clinical field, Ashley brings social work theories and models to program management for the rare disease community.

In her free time, Ashley serves as a board member for the Girls on The Run- Orange County Chapter, offering her skills and experience in human services and non-profit business. She is also a volunteer with her international sorority as part of the chapter education team, where she travels to schools to deliver educational programs on topics that affect the collegiate cultural trends. Ashley has a large passion for community education and believes that being educated is the first way to make a change.

Kelly D. F. Hagman, MS, CGC | Moderator

Prior to receiving her masters in Genetic Counseling in 2004, Kelly Hagman spent several years in a research lab studying DNA mutagenesis. She started her career as a genetic counselor at the Molecular Diagnostic Laboratory at City of Hope, where she continued her involvement in research, most of which focused on Li-Fraumeni Syndrome (LFS). Driven by her interest in new molecular technologies, in 2009 Kelly joined Ambry Genetics to lead the genomic services group where she gained expertise in multiple sequencing platforms and DNA/RNA enrichment techniques. In 2011, she transitioned to the clinical team to lead Ambry's clinical genomics offerings, most notably, diagnostic exome sequencing. Kelly is currently the co-chair of the National Society of Genetic Counselors (NSGC) Genomic Technologies Special Interest Group (SIG). Kelly is also a firm believer that the best patient care is achieved through open data sharing. She has more than 35 peer-reviewed publications in molecular genetics (https://www.ncbi.nlm.nih.gov/myncbi/collections/mybibliography/) and has been an invited lecturer at several scientific meetings.