This video is a recording of the MCADD Summit that took place on 2.25.2023, which was jointly organized by MNT4P and SERN. This video is part 1 of a 3 … More →
This video is a recording of the MCADD Summit that took place on 2.25.2023, which was jointly organized by MNT4P and SERN. This video is part 2 of a 3 … More →
This video is a recording of the MCADD Summit that took place on 2.25.2023, which was jointly organized by MNT4P and SERN. This video is part 3 of a 3 … More →
Discusses estate planning for children with complex healthcare needs
Discusses how families advocate for the advancement of newborn screening.
Lori Carter Edwards, PhD, MPH – Addressing Genetic Conditions through a Trustworthy Community Engagement Lens (SERN/SERGG 2022)
Discusses the principles of community engagement, highlighting key strategies to help health professionals build trustworthiness with families, and promote health equity when addressing genetic conditions.
Overview of the Rare Disease Advisory Council (RDAC) and how families can get involved in their state’s organization. Find Your State’s RDAC
Overview of genetic testing. The video is in Spanish with subtitles.
This handout provides answers to frequently asked questions about a genetics visit and what to expect. Genetics Visit FAQ in English Genetics Visit FAQ in Spanish
This is a guide to help you prepare for your telemedicine appointment with your provider. Your provider may have additional requirements for you that are not listed in the document. … More →
Overview of the concepts of genes and chromosomes, the basics of genetics. The video is in Spanish with English subtitles.
Carl Cooley, MD — Collaborative Care among Specialists, Families, and the Primary Care Medical Home for Children with Genetic Conditions (SERN/SERGG 2011)
Dr. Carl Cooley presenting on Medical Home.
Christine Eng, MD — Clinical Whole Exome Sequencing For the Evaluation of Genetic Disorders (SERN/SERGG 2013)
Dr. Eng presents on whole exome sequencing.
The third annual Paul M. Fernhoff Memorial Lecture was held Thursday, September 17, 2015. Dr. Philip Farrell’s keynote address is available here entitled “A Miraculous New Era for Cystic Fibrosis: … More →
Lloyd Sirmons presents on Direct to Consumer Telemedicine Application, with focus on how the DTC market changed with the onset of COVID-19.
Dr. Andersson speaks about telegenetics activities in the Southeast Region Collaborative. This is the first of a two-part presentation along with Dr. David Flannery (presentation also available on SERC).
Meg Comeau, MHA — State Statutes and Legislation Related to Coverage of Dietary Treatments of Heritable Disorders (SERN/SERGG 2017)
Keynote Address: “State Statutes and Legislation Related to Coverage of Dietary Treatments of Heritable Disorders” Meg Comeau, MHA, Catalyst Center, Boston University School of Public Health
Dr. Bober presents on skeletal dysplasia.
Dr. Santiago presents on genetic disease research in Puerto Rico.
Invited Speaker: Emily Lisi, MS, CGC – Mayo Clinic “The Current Status of Direct-to-Consumer Genetic Testing”