Expanding Access To Genetic Services By
Engaging With Communities
April 26 & 27
Location: Virtual
4/26: 8:30am – 4:00pm
4/27: 8:30am – 4:45pm
Spanish Interpretation provided by Equal Access Language Services, LLC
Course Description:
In this virtual meeting, a diverse group of stakeholders will explore strategies that can impact access to patient centered genetics care. Topics include multidisciplinary and multistakeholder collaboration, adapting genetic services for diverse communities, genetics and primary care, point of care tools, solving difficult cases, and evaluation tools for genetics efforts.
Target Audience:
With an explicit goal of including diverse stakeholders, the intended audience includes families impacted by genetic conditions, family organizations, physicians and other health care providers and trainees, public health organizations, NYMAC collaborators, federal and local representatives, industry and insurance parties, and other groups whose work impacts or is impacted by genetic services. Spanish language interpretation and closed captioning will be provided.
Learning Objectives:
At the conclusion of this activity, participants should be able to:
- Summarize existing resources on genetic topics and new models of care that can be used in managing patients with genetic conditions
- List benefits and opportunities for broader engagement of providers, families, and public health entities with families in designing delivery systems for genetic services.
- Identify opportunities for collaboration and resource sharing between NYMAC and your organization
Agendas:
Day 1 (4/26):
Time | Title | Speakers | ZOOM Links |
8:30-9:00 | Social Networking (nonaccredited) |
Main Room-ZOOM 1 | |
9-9:30 | Opening Remarks (nonaccredited) |
Michele Caggana, ScD, FACMG Director, Newborn screening program New York State Department of Health Wadsworth Center | Main Room-ZOOM 1 |
9:30-10:15 | NYMAC Updates, Collaborative Opportunities, and Resources
(CME-CEU) |
Alissa Terry, ScM, CGC, Genetic Counselor, NYMAC | Main Room-ZOOM 1 |
10:15-10:25 | Break | ||
10:25-11:10 | Making strides locally: Progress on genetics access in your state, district or territory (CME-CEU) | Radhika Sawh, MS, CGC, Genetic Counselor, NYMAC Regional Genetics Network
Enrique Lopez, MS, CGC, Genetic Counselor, Saint Joseph’s University Medical Center Cheyla Clark, MS, CGC, Genetic Counselor, University of Texas Southwestern Medical Center of Dallas |
Main Room-ZOOM 1 |
11:10-12:10 | Creating Culturally Responsive Resources and Translations (CME-CEU) | Roseani Sánchez, M.Ed, Project Director, Family Voices | Main Room-ZOOM 1 |
12:10-12:45 | Industry Session 1 (non-accredited) | Inozyme – ENPP1 Deficiency: the clinical spectrum of a rare genetic mineralization disorder, Eric Rush, MD, FAAP, FACMG, CCD | Exhibitor Lecture Hall-ZOOM 2 |
12:45-1:15 | Lunch | ||
1:15-2:45 | Cultural Humility: Lessons from NYMAC collaborations (CME-CEU) | Cheyla Clark, MS, CGC, Genetic Counselor, University of Texas Southwestern Medical Center of Dallas
Enrique Lopez, MS, CGC, Genetic Counselor, SaintJoseph’s University Medical Center Maria Isabel Frangenberg, Bacata Global Engagement Firm Amanda Bergner, MS, LCGC, Associate Professor of Genetic Counseling, Columbia University, Director, Columbia University Genetic Counseling Graduate Program Alissa Terry, ScM, CGC, Genetic Counselor, NYMAC Regional Genetics Network |
Main Room-ZOOM 1 |
2:45-2:55 | Break | ||
2:55-3:40 | Exhibit Hall (non-accredited) | Exhibitor Hall-ZOOM 1 (Breakout Rooms) | |
3:40-4:00 | Closing Remarks (non-accredited) | Joann Bodurtha, MD, MPH, Clinical Geneticist, Johns Hopkins School of Medicine | Main Room-ZOOM 1 |
4:00 | Continuing the Conversation (non-accredited) | Main Room-ZOOM 1 |
Day 2 (4/27):
Time | Title | Speakers | ZOOM Links |
8:30-9:00 | Social Networking (nonaccredited) |
Main Room-ZOOM 1 | |
9-9:15 | Opening Remarks (nonaccredited) |
Michele Caggana, ScD, FACMG Director, Newborn screening program New York State Department of Health Wadsworth Center | Main Room-ZOOM 1 |
9:15-10:30 Concurrent Session |
Telegenetics Updates for your practice (CME-CEU) | Alissa Terry, ScM, CGC, Genetic Counselor NYMAC Regional Genetics Network, Moderator
Dr. Kathy H. Wibberly, PhD, Director, Mid-Atlantic Telehealth Resource Center, Karen S. Rheuban Center for Telehealth, University of Virginia School of Medicine Lloyd Sirmons, Director Southeastern Telehealth Resource Center Danielle Louder, Director, Northeast Telehealth Resource Center, Co-Director, MCD Public Health Lin Perry, MPA, Parent/Family Advocate |
Main Room-ZOOM 2 |
9:15-10:30 Concurrent Session |
Genetics in Primary Care: A Vision for the Future of Precision Medicine (CME-CEU) | Dr. Elizabeth l. Kudron, MD, MPH, FAAP, Children’s Hospital Colorado, Colorado Center for Personalized Medicine, University of Colorado Anschutz Medical Campus | Main Room-ZOOM 3 |
10:30-10:40 | Break | ||
10:40-11:55 Concurrent Session |
1. Strategies to developing self-advocacy to improve outcomes in emergency situations (CME-CEU) | Radhika Sawh, MS, CGC, Genetic Counselor, NYMAC Regional Genetics Network | Main Room-ZOOM 2 |
2. Structural Racism in Genetics: Consequences and a Plan for the Future (CME-CEU) | Dr. Jessica Gold, MD, Medical and Biochemical Geneticist, Postdoctoral Research Fellow Children’s Hospital of Philadelphia
Barbara Harrison, MS, CGC, Genetic Counselor, Howard University Grace-Ann Fasaye, ScM, CGC, Senior Genetic Counselor, National Institutes of Health, National Cancer Institute, Center for Cancer Research, Genetics Branch |
Main Room-ZOOM 3 | |
11:55-12:30 Concurrent Session |
Industry Sessions 2 & 3 (nonaccredited) | GeneDx – Rapid Genomic Sequencing in the Neonatal Intensive Care Unit: Improving Access to Precision Medicine, Katie Fritinger,MS, CGC (ZOOM 2)
Sanofi – Hidden in Plain Sight: Recognizing Manageable Genetic Conditions, Nicole Luongo, MS, PA-C & Emily Glogowski, MS, MSc, LCGC (ZOOM 3) |
Exhibitor Lecture Hall-ZOOM 2 & ZOOM 3 |
12:30-1:00 | Lunch | ||
1:00-1:35 Concurrent Session |
Industry Sessions 4&5 (nonaccredited) | Invitae – The benefits and limitations of artificial intelligence (AI) and machine learning in clinical genomics and variant interpretation, Laure Fresard, PhD (ZOOM 2)
Ultragenyx – Understanding Long-Chain Fatty Acid Oxidation Disorders: Learn from an Expert, Amie Thompson, RD, LD (ZOOM 3) |
Exhibitor Lecture Hall-ZOOM 2 & ZOOM 3 |
1:35-2:55 Concurrent Session |
Evaluation and Quality Improvement in Genetics: Applications and Resources (CME-CEU) | Dr. Melissa Raspa, PhD, Evaluator RTI International
Oksana Kutsa, MS, Evaluator RTI International |
Main Room-ZOOM 2 |
1:35-2:55
Concurrent Session |
Solving difficult cases: Lessons from the Undiagnosed Disease Network and the Rare Genomes Project of the GREGoR Consortium (CME-CEU) | Dr. William Gahl, MD, PhD, Director, Undiagnosed Disease Program; Senior Investigator, Medical Genetics Branch; Head, Human Biochemical Genetics Section National Human Genome Research Institute
Dr. Anne O’Donnell-Luria, MD, PhD, Co-Director, Broad Center for Mendelian Genomics; Assistant Professor, Harvard Medical School; Physician, Division of Genetics and Genomics, Boston Children’s Hospital Randie and David Harpell, Parent Advocates |
Main Room-ZOOM 3 |
2:55-3:25 | Exhibit Hall (nonaccredited) | Exhibitor Hall-ZOOM 1 (Breakout Rooms) | |
3:25-3:35 | Break | ||
3:35-4:35 | Putting it into Practice: Facilitated Planning for Meaningful Changes to Current Practice (CME-CEU) | Alissa Terry, ScM, CGC, Genetic Counselor NYMAC Regional Genetics Network | Main Room-ZOOM 1 |
4:35-4:45 | Closing Remarks (nonaccredited) | Joann Bodurtha, MD, MPH, Clinical Geneticist, Johns Hopkins School of Medicine | Main Room-ZOOM 1 |
4:45 | Continuing the Conversation (nonaccredited) | Main Room-ZOOM 1 |
Planning Committee
Alaina Acchione
- Genetic Counseling Student
- Columbia University
Patricia Bish, BS
- Project Manager, Ferre Institute, Inc.
- NYMAC Director of Communications & IT
Joann Bodurtha, MD, MPH, FACMG
- Professor of Genetic Medicine, Pediatrics and Oncology in the McKusick-Nathans Department of Genetic Medicine at the Johns Hopkins School of Medicine with appointments in the Department of Health, Behavior and Society in the Bloomberg School of Public Health and the School of Nursing.
- NYMAC Project co-Director
Alissa Bovee Terry, ScM, CGC
- Independent Consultant to NYMAC
- NYMAC Project Manager & Telegenetics Navigator
Michele Caggana, Sc.D., FACMG
- Deputy Director of the Division of Genetics, Chief of the Laboratory of Human Genetics, and Director of the Newborn Screening Program at the Wadsworth Center, NYS DOH.
- NYMAC Project co-Director
Cheyla Clark, MS, CGC
- Genetic Counselor
- University of Texas Southwestern Medical Center of Dallas
Luba Djurdjinovic, MS
- Director, Genetic Counseling Program, Ferre Institute, Inc.
- NYMAC Project Administrator
Andrea Durst, MS, DrPH, LCGC
- Assistant Professor, University of Pittsburgh
- NYMAC Advisory Committee Chair
RaeLynn Forsyth, MD
- Medical Biochemical Genetics Fellow, UPMC Children’s Hospital of Pittsburgh
Maria Isabel Frangenberg, BA
- NYMAC Consultant
Linda Friehling, MD
- Neonatologist
- West Virginia University
Oksana Kutsa, MS
- RTI International
- NYMAC Evaluation Consultant
Enrique Lopez, MS, CGC
- Genetic Counselor
- Saint Joseph’s University Medical Center
Elisa Muñiz, MD, MS, FAAP
- Program Director, Fellowship Program in Developmental-Behavioral Pediatrics/Asst. Prof. of Pediatrics at Albert Einstein College of Medicine Rose F. Kennedy Children’s Evaluation and Rehabilitation Center, Division of Dev. Medicine, The Children’s Hospital at Montefiore
Melissa Raspa, PhD
- RTI International
- NYMAC Evaluation Consultant
Lisa Richard
- SWA Regional Network Coordinator, Rural Outreach Specialist, Center for Family Involvement, Virginia Commonwealth University
Roseani Sánchez Algarín, MA
- Project Coordinator, Family Voices National
- NYMAC Consultant
Radhika Sawh, MS, CGC
- Genetic Counselor
- NYMAC Consultant
Jerry Vockley, MD, PhD
- Cleveland Family Endowed Chair in Pediatric Research, Professor of Human Genetics, University of Pittsburgh Chief of Genetic and Genomic Medicine, Director of the Center for Rare Disease Therapy, UPMC Children’s Hospital of Pittsburgh
Presenter(s)
Amanda Bergner, MS, LCGC
- Associate Professor of Genetic Counseling, Columbia University, Director, Columbia University Genetic Counseling Graduate Program
Joann Bodurtha, MD, MPH, FACMG
- Professor of Genetic Medicine, Pediatrics and Oncology in the McKusick-Nathans Department of Genetic Medicine at the Johns Hopkins School of Medicine with appointments in the Department of Health, Behavior and Society in the Bloomberg School of Public Health and the School of Nursing.
- NYMAC Project co-Director
Alissa Bovee Terry, ScM, CGC
- Independent Consultant to NYMAC
- NYMAC Project Manager & Telegenetics Navigator
Michele Caggana, Sc.D., FACMG
- Deputy Director of the Division of Genetics, Chief of the Laboratory of Human Genetics, and Director of the Newborn Screening Program at the Wadsworth Center, NYS DOH.
- NYMAC Project co-Director
Cheyla Clark, MS, CGC
- Genetic Counselor
- University of Texas Southwestern Medical Center of Dallas
Grace-Ann Fasaye, ScM, CGC
- Senior Genetic Counselor
- National Institutes of Health, National Cancer Institute, Center for Cancer Research, Genetics Branch
Maria Isabel Frangenberg, BA
- NYMAC Consultant
William Gahl, MD, PhD
- Director, Undiagnosed Disease Program; Senior Investigator, Medical Genetics Branch; Head, Human Biochemical Genetics Section National Human Genome Research Institute
Jessica Gold, MD
- Medical and Biochemical Geneticist, Postdoctoral Research Fellow Children’s Hospital of Philadelphia
David and Randie Harpell
- Family Advocates
Barbara Harrison, MS, CGC
- Genetic Counselor, Howard University
Elizabeth l. Kudron, MD, MPH, FAAP
- Children’s Hospital Colorado, Colorado Center for Personalized Medicine, University of Colorado Anschutz Medical Campus
Oksana Kutsa, MS
- RTI International
- NYMAC Evaluation Consultant
Enrique Lopez, MS, CGC
- Genetic Counselor
- Saint Joseph’s University Medical Center
Danielle Louder
- Director, Northeast Telehealth Resource Center, Co-Director, MCD Public Health
Anne O’Donnell-Luria, MD, PhD
- Co-Director, Broad Center for Mendelian Genomics; Assistant Professor, Harvard Medical School; Physician, Division of Genetics and Genomics, Boston Children’s Hospital
Lin Perry, MPA
- Parent/Family Advocate
Melissa Raspa, PhD
- RTI International
- NYMAC Evaluation Consultant
Roseani Sánchez Algarín, MA
- Project Coordinator, Family Voices National
Radhika Sawh, MS, CGC
- Genetic Counselor
- NYMAC Consultant
Lloyd Sirmons
- Director Southeastern Telehealth Resource Center
Kathy Wibberly, PhD
- Director, Mid-Atlantic Telehealth Resource Center, Karen S. Rheuban Center for Telehealth, University of Virginia School of Medicine
Accredited Continuing Education Information
CME Educational Credits
Accreditation
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the American College of Medical Genetics and Genomics (ACMG) and New York Mid-Atlantic Caribbean Regional Genetics Network (NYMAC). The ACMG is accredited by the ACCME to provide continuing medical education for physicians.
Credit Designation
The American College of Medical Genetics and Genomics designates this live (virtual) activity for a maximum of 8.75 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Claiming your Educational Credits
Complete the activity and carefully complete the evaluation form. The deadline to claim educational credits is within 30 days from the date of the activity. Educational credit requests after this date will not be accepted.
Claiming Genetic Counseling CEUs
- The National Society of Genetic Counselor s(NSGC) has authorized NYMAC Regional Genetics Network to offer up to 8.75 Category 1 contact hours for this meeting. The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of genetic counselor certification and recertification.
- You must log into the live webinar to get credit (you cannot just call in)
- We must provide NSGC with the evidence of your attendance.
- You must document your participation for attended sessions completing the online self-report form and the online evaluation that will be emailed to attendees after the meeting. A PDF of the meeting survey will also be available for download on this page during the conference for you to complete as you go.
- You will have to enter your NSGC User ID to complete the form
- NYMAC is offering the purchase of CEU during registration for $10
- Questions? Please email Alissa: nymactelegenetics@gmail.com
These resources are supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $969,578 with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov .
Accredited Continuing Education Financial Disclosure
The American College of Medical Genetics and Genomics (ACMG) is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide Accredited Continuing Education (ACE) for physicians. ACMG is an organization committed to improvement of patient care and general health by the incorporation of genetics and genomics into clinical practice.
ACMG has implemented the following procedures to ensure the independence of ACE activities from commercial influence/promotional bias, the Accreditation Council for Continuing Medical Education (ACCME) requires that providers (ACMG) must be able to demonstrate that: 1) everyone in a position to control the content of an ACE activity has disclosed all financial relationships that they have had in the past 24 months with ineligible* companies; 2) ACMG has implemented a mechanism to mitigate relevant financial relationships; and 3) all relevant financial relationships with ineligible companies are disclosed to the learners before the beginning of the educational activity. The learners must also be informed if no relevant financial relationships exist.
*Ineligible companies are defined as those whose primary business is producing, marketing, selling, re-selling, or distributing healthcare products used by or on patients.
Please review the policies below regarding the ACMG Education program
All of the relevant financial relationships listed for these individuals have been mitigated.
Name | Program Committee Member | Presenter Panelist Moderator |
Peer Reviewer | Financial Disclosure Relationship/Company |
Acchione, Alaina | X | Nothing to disclose | ||
Bergner, Amanda | X | Consultant: Up To Date | ||
Bish, Patricia | X | Nothing to disclose | ||
Bodurtha, Joann | X | X | Nothing to disclose | |
Caggana, Michele | X | Nothing to disclose | ||
Clark, Cheyla | X | X | Nothing to disclose | |
Djurdjinovic, Luba | X | Nothing to disclose | ||
Durst, Andrea | X | Nothing to disclose | ||
Fasaye, Grace-Ann | X | Nothing to disclose | ||
Forsyth, RaeLynn | X | Nothing to disclose | ||
Frangenberg, Maria Isabel | X | X | Nothing to disclose | |
Friehling, Linda | X | Nothing to disclose | ||
Gahl, William | X | Nothing to disclose | ||
Gold, Jessica | X | Nothing to disclose | ||
Harpell, David | X | Nothing to disclose | ||
Harpell, Randie | X | Nothing to disclose | ||
Harrison, Barbara | X | Nothing to disclose | ||
Kudron, Elizabeth | X | Nothing to disclose | ||
Kutsa, Oksana | X | X | Nothing to disclose | |
Lopez, Enrique | X | X | Nothing to disclose | |
Louder, Danielle | X | Nothing to disclose | ||
Muniz, Elisa | X | Nothing to disclose | ||
O’Donnell-Luria, Anne | X | Consultant: Congenica, SAB: Tome Biosciences | ||
Perry, Lin | X | Nothing to disclose | ||
Raspa, Melissa | X | X | Nothing to disclose | |
Richard, Lisa | X | Nothing to disclose | ||
Sanchez Algarin, Roseani | X | X | Nothing to disclose | |
Sawh, Radhika | X | X | Consultant/Honorarium: Bristol-Myers Squibb | |
Sirmons, Lloyd | X | Nothing to disclose | ||
Terry, Alissa | X | X | Nothing to disclose | |
Vockley, Jerry | X | Consultant: Agios Pharmaceuticals, Inc., Applied Therapeutics, Inc., Axcella Health, BioMarin Pharmaceutical Inc., LogicBio Therapeutics, Sangamo Therapeutics, Inc., Sanofi Pasteur Biologics, LLC., Synlogic, Inc., WebMed Health
Grant / Contract: 4DMT, Aeglea BioTherapeutics, Arcturus Therapeutics, Inc. , BioMarin Pharmaceutical Inc., CoA Therapeutics, HemoShear Therapeutics, Inc., Homology Medicines, Inc., Kriya, LogicBio Therapeutics, Moderna Pharmaceuticals, Nestle Health , Nestle Health , PTC Therapeutics, Inc., Reata Pharmaceuticals, Reneo Pharmaceuticals, Stealth BioTherapeutics, Inc. , Synlogic, Inc., Ultragenyx Pharmaceutical Inc. Stock: American Gene Technologies |
||
Wibberly, Kathy | X | Nothing to disclose |
Disclaimer
ACMG educational programs are designed primarily as an educational tool for health care providers who wish to increase their understanding of the application of genomic technologies to patient care. The ACMG does not endorse or recommend the use of this educational program to make patient diagnoses, particular by individuals not trained in medical genetics. Adherence to the information provided in these programs does not necessarily ensure a successful diagnostic outcome. The program should not be considered inclusive of all proper procedures and or exclusive of other procedures and that are reasonably directed at obtaining the same results. In determining the propriety of any specific procedure or, a healthcare provider should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient or specimen.
Questions regarding educational credits should be directed to education@acmg.net .