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.

ACMG Education Policies

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 .