NERGN Annual Meeting

NERGN Annual Meeting will be held on April 8-9, 2021

Check back for slides and recording.

Download the agenda.

The first day focused on families and familiy organizations. The second day was geared toward all of our stakeholders. 

Day 1

1:00 – 1:15 pm           Welcome & introductions – Kim Phillips                     

1:15 – 2:00 pm            Identifying families in need of genetic connections
                                       What to look for – Leah Burke, MD
                                         Using the “GREAT” tool as one approach – Carmina Cirioli and   Nanfi Lubogo, PATH-CT

2:00 – 2:40 pm             Connecting families with genetics – how and why
  Presentation and facilitated discussion – Marci Sontag

2:50 – 3:50 pm              State updates – Karen Volle

  • CT – Carmina Cirioli and Nanfi Lubogo
  • MA – Pat Nemia
  • ME –
    • Carrie Woodcock and Robin Levesque
    • Sherry Locke, Aroostook County Action Program
    • Angel Murchison, Cary Med Center
  • NH – Martha-Jean Madison
  • RI – Tara Hayes
  • VT – Betty Morse and Jamie Rainville

3:50 pm – 4:00 pm        Closing thoughts – Ed Kloza

Day 2

9:00 – 9:15 am                Opening remarks – Kim Phillips                                                                                                           

9:15 – 10:00 am              Updates on NERGN Activities

  • Provider education – Leah Burke
  • Medically underserved – Kim Phillips
  • Partnerships – Ed Kloza and Karen Volle
  • Telehealth – Kim Phillips

10:00 – 11:15 am           Panel 1: Innovative Care Management and Web Services

  • Brian Skotko, MD – Down Syndrome Clinic to You (DSC2U)
  • Mark Korson, MD – VMP Genetics
  • Tara Hays, Rhode Island Parent Information Network                                 

11:25 – 11:50 am           Engaging medically underserved / diverse populations

  • Lori Dean Williamson – Experience with Marshallese and American Indian communities in the Heartland Regional Genetics Network

11:50 – noon                  Closing remarks – Leah Burke, MD

Noon                              Adjourn

Previous NERGN Annual Meetings

2018 Annual Meeting: April 5-6, 2018

NERGN Annual Meeting, April 5-6, 2018 

Making Connections: Assuring Access for Children with Special Health Care Needs to Genetic Services. The right care in the right way at the right place every time.    

Enjoy the photos here!

Meeting summaries:

    Olga Lopez                     Neesu Wushuwumoag                  Virginia Pertillar

Presentation slides:

2019 Annual Meeting: May 16-17, 2019

NERGN Annual Meeting, May 16-17, 2019

Connecting people to genetic services - opportunities for innovation 

Portsmouth, NH

Enjoy the photos here!

Day 1:

  • Supporting Connections to Genetic Services via Quality Improvement
  • Review of NERGN resources available for family and staff
  • Review and discussion of family expectations for genetic services

Day 2:

  • Steering Committee meeting
  • Opening remarks
  • Panel discussion: Success stories and barriers in connecting families with genetic services
  • Considerations for genetic services for immigrants and refugees
  • Group discussion: What should families expect from their provider

Previous NEGC Annual Meetings

2017 Annual Meeting: April 6-7, 2017

NEGC Annual Meeting: April 6-7, 2017

Hilton Garden Inn, 100 High Street, Portsmouth, New Hampshire

Click here for meeting materials.

Click here for photos from this year!

Click here for the NEGC Slideshow from the Past Ten Years.

Day 1:

10:00 AM – 11:00 AM                    Transition Work Group Meeting (agenda)

11:15 AM – 12:15 PM                    Health Care Access & Finance Work Group Meeting (agenda)                      

                                                       LUNCH   (open to all; in the dining room)

1:15 PM – 2:15 PM                         Medical Home Work Group Meeting (agenda)

2:30 PM – 3:30 PM                         Education and Outreach Work Group Meeting (agenda)

3:45 PM – 5:45 PM                         Quality Improvement Work Group Meeting (agenda)

6:30 PM – 9:00 PM                         Celebratory Dinner

Day 2:

7:30 AM – 9:30 AM                        NEGC Advisory Committee Meeting (Closed Breakfast Meeting)

9:45 AM – 10:00 AM                      Opening Remarks
Monica McClain, PhD   NEGC Director

10:00 AM – 12:00 PM                  Telehealth Strategies for Primary Care: Implications for Genetics                                                                Daren Anderson, MD, Community Health Center

                                                       Model Programs and Outcomes in the Northeast and Beyond                                                                    Danielle Louder, Northeast Telehealth Resource Center

12:00 PM - 1:00 PM                       LUNCH

1:00 PM – 2:00 PM                        A Perspective on Genomics, Precision Health and Primary Care
Greg Feero, MD, PhD
                                                       Faculty, Maine-Dartmouth Family Medicine Residency
                                                       Associate Editor, Journal of the American Medical Association

2:00 PM - 2:30 PM                        Wrap-up and Closing Remarks
                                                      Monica McClain, PhD and John Moeschler, MD

2016 Annual Meeting: April 7-8, 2016

NEGC Annual Meeting: April 7-8, 2016

Hilton Garden Inn, 100 High Street, Portsmouth, New Hampshire

Click here to see photos!

Click on links below for slides.
Videos are available for many of the presentations
(closed captions are available; click on "CC") 


Day 1:

Medical Home Work Group

Education and Outreach Work Group

Health Care Access and Finance Work Group


Transition Work Group

Quality Improvement Work Group

Day 2:

A moment of remembrance for Sondra Solomon,  Leah Burke, MD


Programmatic and Ethical Implications of Integrating Next Generation Genomic Sequencing into State NBS ProgramsAaron Goldenberg, PhD, Assoc.Professor of Bioethics, Case Western Reserve University
Video recording  /  Slides           


NewSTEPs: A View of Newborn Screening Nationally and Regionally with an Eye to the FutureThalia Wood, MPH, Association of Public Health Laboratories


Genetic Metabolic Center for EducationMark Korson, MD


Future Models of the NCC/RC NetworkCelia Kaye, MD, PhD; Chair, Regional Support Services Model work group

2015 Annual Meeting - April 9-10, 2015

Portsmouth, NH

Day 1:

Education & Outreach Work Group

"Parent Voices", Ann Donahue Dillon, UNH Institute on Disability

Summary: The meeting began with an update on the Genetics Education Materials for School Success (GEMSS) website, which now features 37 conditions and gets roughly 15,000 hits a month worldwide.  This past year we enhanced content for autism, updated content about communication, made it easier to find certain topics, created a promotional video, and became mobile-optimized. Leah invited Ann Dillon and her group of enthusiastic parent volunteers to share the work they did in disseminating GEMSS.  They even created a model slide set that could be adapted by other parents in the future.The group had a good discussion about adding “DNR” (do not resuscitate) content to the website, and also about sustainability. One project for the coming year will be finalizing a “Rare Toolkit” on IEP/504 Plans, with Global Genes                                         

Medical Home Work Group

Summary: This was the first face-to-face meeting of our redesigned work group. Kudos to Jill Rinehart and Marinell Newton for driving through a Vermont blizzard to get there! Dr. Prazar began with an overview of the webinar series on care coordination developed by the group.  (Webinars are archived here.) Our primary partners thus have been pediatric improvement programs in ME, NH and VT. However, engaging the other NE states is on the wish list so this was a topic for discussion. Finally, the group focused on helping children with complex and behavioral issues, previously identified as being a challenging area for physicians. 

Health Care Access & Finance Work Group

"Health Policy and Advocacy Workshop", Gabrielle Orbaek White, Community Catalyst

Summary: This group planned their agenda to include an educational piece, work time, and brainstorming. Meg welcomed Gabrielle Orbaek White, from Community Catalyst in Boston, to present on Health Policy and Advocacy. This was a perfect fit for the group, which included not only Family Voices representatives who routinely advocate for CSHN, but two young adults heading to DC the following week in their own advocacy journeys!  After lunch, the group finalized its survey and the dissemination plan. Recall this is the group’s 2nd survey of NE families of children with genetic conditions, regarding coverage and access to health care. We expect to disseminate it in Aug/Sept 2015. 

Transition Work Group

"Regional and National Update", Susan Waisbren, Children's Hospital Boston 
"Adult Health Issues", Farrah Rajib, Children's Hospital Boston
"Emotional Intellience on the Go", Elizabeth Donovan, Bodimojo

Summary: After reviewing what’s happening with transition in the region and nationally, Susan introduced Dr. Farrah Rajabi, Children’s Boston, who provided an update on the Health Survey for Adults. This has been a project of the work group for the past two years and now has data to report. They are still recruiting!  Susan then welcomed guest speaker Liz Donovan from Bodimojo. Dr. Donovan introduced her app, part of an innovative approach to obtaining quantitative data regarding “light touch” wellness interventions.  The possibility of using this model to measure a successful transition generated a great deal of interest, particularly from folks at Next Step who are tech savvy and innovative themselves. More to come! In planning for the future, we determined to “do what we do well”, an idea endorsed by John Moeschler. 

Quality Improvement Work Group

Summary: Seven clinical sites were represented at the QI meeting, including some who have collected data for the QI data registry project for years, and some who are gearing up to collect data. Each of the sites gave a status update, prompting discussions ranging from how to define a term to what is the feasibility of doing the work.  The consensus was to continue doing what we’re doing, and to plan a follow up session at the Consortium of Metabolic Programs annual meeting, hosted by Susan Waisbren, in the fall.

Day 2:

NEGC Advisory Committee Meeting 

Summary: Our Advisory Committee focused on the national context for HRSA, National Coordinating Center (NCC), and the Regional Collaborative (RC) system. Recall that in June 2015, we began year 4 of a 5 year funding cycle. Our charge now is to prepare for the next 5-year funding cycle, in a healthcare environment that is changing rapidly: 

         Alternative payment models will grow
​         Less care will be provided in hospitals and physicians’ offices
         Precision medicine initiative is coming of age

We were asked by Joan Scott, HRSA, and David Flannery, NCC, to consider these questions:

        How do you define genetic services?
        What genetic service need is not being met?
        How might this need be met?
        How might regional care center models figure into the process?

Although still under development, we can anticipate:

        Reduced funds but what remains is similar
        Change in NCC work groups (addition of Public Health and Direct Care Services, no longer able to support
                Medical Home and Transition work groups in the same manner)
        Increased focus on quantitative health outcome data


Opening Remarks
Monica McClain, PhD   NEGC Co-Director

Plenary Session

        ELSI Considerations and IRB Responses to
        Genomic Sequencing in the General Newborn Population

        Caroline Weipert, MS; Brigham and Women’s Hospital
        Meghan Towne, MS, CGC ; Manton Center


        Living with Distinction: 
        The Psychosocial Correlates of Genetic Disorder Related Stigma 
        Sondra Solomon, PhD

        "Welcome to Holland": the Impact on Parents of a Diagnosis of CCHD
        Joanna Fanos, PhD

HRSA Updates
Joan Scott, MS, CGC

National Coordinating Center/Regional Collaboratives Updates
David Flannery, MD

Work Group Chair Reports

Wrap-up and Closing Remarks
Monica McClain, PhD and John Moeschler, MD   NEGC Co-Directors

2014 Annual Meeting: April 10-11, 2014

View Pictures of the Event!

Day 1:

Transition Work Group (agenda)

Education & Outreach Work Group (agenda)

  • Overview and Updates - Leah Burke, MD; Christine Giummo, CGC, Ann Dillon, OTR/L
  • Analysis of GEMSS Survey - Andy Gray, UNH LEND Trainee
Health Care Access & Finance Work Group (agenda)
Quality Improvement Work Group (agenda)

Day 2:

Advisory Committee meeting (agenda)

Opening Remarks 

 Monica McClain, PhD   NEGC Co-Director
Plenary Sessions
Partner Updates
2013 Annual Meeting: April 4-5, 2013

Hilton Garden Inn, Portsmouth, NH 
View pictures of the Event here

DAY 1:

DAY 2:

2012 Annual Meeting: November 15-16, 2011

Portsmouth, NH

The NEGC held a very successful annual meeting. Click on the presentations below.

All agreed that we had the benefit of more time, more space, and more stakeholders with varied expertise. The NEGC staff would like to thank everyone who participated!

We continued to work with New England Regional Genetics Group (NERGG) on a collaborative session on Transition during their annual conference on December 1-2, 2001.

  • Carl Cooley and Susan Waisbren were featured speakers. Dr. Waisbren's presentation, Transition as a Psychological Rite of Passage, reflects her current think about why transition is so difficult, and why it presents an opportunity!
  • Deanna Holt and Mallory Cyr provided the young adult perspective, and folks from CMHI presented on Got Transition! (photo)
2011 Annual Meeting: November 30-December 1, 2010

Portsmouth, NH

Click here to read the summary report, including results of work group and breakout session discussons, and of the participants' survey.

participants in the meeting

A speaker on stage