NCC at the ACMG Annual Clinical Genetics 

2016 Meeting

Advocate Leader Program, Community Conversation, and Posters

NCC Advocate Leader Program

From March 9 to 12th, nine advocate leaders, seven genetic counseling students, and faculty came together to discuss their experiences both at the ACMG Annual Clinical Genetics Meeting and their broader experience.  Through rich and active discussions, each participants was able to lend their perspective to inform the genetic service landscape.  Attendees perspectives will be published shortly.

NCC Community Conversation

Think about how you access information?  What are your preferences in reaching and communicating with other colleagues and patients?  How convenient would it be for an app to relay information about a special diet?  What if a state legislature was considering dramatic cuts to newborn screening funding and how might social media help? The interaction between healthcare and technology continues to grow exponentially and increasingly has a central role in the communication between patients and providers.  Be a part of a dialog between consumers, healthcare providers, and advocacy organizations as they discuss the role technology plays in empowering the relationship between consumers and providers.  Discussions will highlight the utility of patient registries and social media in connecting individuals with rare conditions; how social media has played a role in advocacy; ways in which patient registries led by consumers are helping research; demonstrate the connective power of technology through a demonstration of one app,; and highlight telemedicine opportunities for providers. Throughout the discussion, audience members will be encouraged to share their own experiences, ideas, and expertise.  

Julie Tucker, SERC Consumer

Other Activities

In addition to the two programs, NCC exhibited at the meeting as well as presented a poster presentation.  The poster which outlines the listening session process undertaken to better understand the present genetic service system was selected as one of the best abstracts of the meeting!