News from the 2012-2017 Cycle 

Lunch and Learn with Dr. David Flannery January 28, 2015  

Invited by SERC, Dr. David Flannery will speak at Emory Genetics Laboratory to discuss the use and provide hands-on experience for telemedicine technology.

NCC Community Conversation 2015 March 24, 2015  

During the evening of March 24th, the NCC Community Conversation, in collaboration with MSGRC, will be held for ACMG meeting participants to engage in a dialogue about undiagnosed conditions.  Speakers at the event include physicians, the director and producer of the documentary UNDIAGNOSED, and consumers.

NCC Advocate Leader Program 2015 March 24-28, 2015  

Nine advocate leaders and eight genetic counseling students will come together, with professional facility, to have breakfast and lunch discussions about ACMG Annual Meeting sessions and about their experience in the genetic service delivery system.  Information about the experience can be found here.

NEGC 2015 Annual Meeting April 24-26, 2015  

On April 9-10, the New England Genetics Collaborative will hold an annual meeting to have regional workgroup discussions and to discuss national programs.

Heartland 2015 Annual Conference April 29- May 1, 2015  

On April 29- May 1, Heartland Genetic Services Collaborative 11th Annual Conference will be held to discuss projects conducted at the state, regional, and national level.

ACMG Receives Funding to Continue the National Coordinating Center for the Regional Genetic Service Collaboratives June 1, 2015  

In March 2015, ACMG received notice that it was awarded funding to continue the cooperative agreement with HRSA to support the following goals: develop a framework for regional genetic care centers; provide an infrastructure that strengthens communication and collaboration between the RCs, offer technical and clinical expertise as needed, promote and disseminate outcomes of RC activities; and implement the NGECN.

A Dialogue: Addressing and Paying for Genetic Services in Integrated Delivery Systems June 15, 2015  

The NCC Healthcare Access and Financing Workgroup is bringing together stakeholders from private and public health insurers, consumers, providers, public health professionals, and policymakers to discuss the gaps and barriers that exist in healthcare payment and delivery for individuals to obtain genetic services.  Meeting materials, as well as meeting updates, can be found here.

NGECN Webinar July 9, 2015  

The National Genetics Education Consumer Network (NGECN), in an effort to improve healthcare for individuals with genetic conditions, hosted a webinar to discuss what data should be captured from consumers in a national needs assessment.

National Center for Medical Home Implementation Launches New Website September 10,2015  

The mission of the National Center for Medical Home Implementation is to "ensure all children and youth- particularly those with special health care needs- have access to medical home".  This goal is achieved through the development and distribution of medical home implementation tools and resources, providing technical assistance, conducting pilot projects, and collaborating with local, state, and national partners.

Region 4 Midwest Annual Meeting 2015 October 19-21, 2015

The Region 4 Midwest Genetics Collaborative Regional Meeting will take place on October 19-21st in East Lansing, Michigan.  Information about the meeting can be found here.

NCC / RC Project Director and Project Manager Annual Meeting 2015 November 12-13, 2015

The NCC/RC Project Director and Project Manager Meeting will take place in downtown Washington, DC on November 12-13th.  Over 40 representatives from the Regional Collaboratives, federal partners, and partner organizations will participate in the two-day meeting focusing on the current needs assessment being conducted by NCC.  Discussion will include the national needs assessment surveys administered through NCC and NGECN, as well as the work currently being conducted by the NCC Regional Support Service Model Workgroup.  Presentations from partner organizations (including GMCE, NewSTEPs, and the National Children's Health Survey) will be given.  

NCC Regional Support Service Model Workgroup In-Person Meeting December 10-11, 2015

On December 10th and 11th, the NCC Regional Support Service Model Workgroup will meet in-person in Bethesda, MD to draft recommendations for a regional genetic center(s).  The charge of the workgroup is to examine current regional structures and then to develop a regional genetic center model(s) to HRSA for 2017 and beyond.  Learn more about the work already done by the workgroup here and be sure to check back to learn more about the meeting.

NCC Newsletter-February 2016 February 1, 2016

The newly redesigned NCC monthly newsletter is now available! This issue include a request for comment on the NCC Regional Support Service Model Draft Recommendation Brief, Calendar, and Workgroup Updates. 

NCC/RC NBSTRN LPDR LTFU Project February 26, 2016

As a part of the continual effort to bolster long-term follow-up data collection in the United States, the NCC, in partnership with the Newborn Screening Translational Network (NBSTRN), is excited to announce a new project that seeks to better understand LTFU in newborn screening within the context of public health.  Information about the project as well as informational webinars can be found here.

NCC Newsletter-March 2016 March 1, 2016

This month's NCC newsletter highlights the Community Conversation to be held at the ACMG Annual Clinical Genetics Meeting 2016. "Can You Hear Me Now?: Empowering Relationships between Consumers and Genetics Providers through Technology" will be held on Tuesday, March 8th. The issue also provides the March Calendar and NCC Workgroup Updates.

NCC Activities at the ACMG Annual Clinical Genetics 2016 Meeting March 8-12,2016

In addition to engaging in ACMG Meeting Sessions, NCC hosts a variety of activities at the ACMG Annual Clinical Genetics Meeting.  These events include the NCC Advocate Leader Program, NCC Community Conversation, and poster presentations.  To learn more about the activities, please click here.

NEGC Annual Meeting 2016 April 7-8, 2016

The New England Genetics Collaborative (NEGC) Annual Meeting was held in Portsmouth, NH on April 7th and 8th. NEGC workgroups met on the first day.  The second meeting day consisted of a variety of topics including implications of next generation genomic sequencing, the Genetic Metabolic Center for Education, and the future of the NCC/RC system.  View the highlights here.

MSGRC Annual Meeting April 14-16, 2016

The Mountain States Genetics Regional Collaborative (MSGRC) Annual Meeting was held in Phoenix, AZ from April 14th-16th. Discussions centered around current workgroup projects, as well as discussions about the coming grant year.  Information about the meeting can be found here.

NCC Newsletter-May 2016 May 1, 2016

This month's NCC newsletter highlights the final NCC Regional Support Service Model Workgroup Recommendation Brief and the Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary Care and Specialty Providers.

NCC/RC NBSTRN LTFU LPDR Project Meeting May 11, 2016

On May 11th, the NCC/RC NBSTRN LTFU LPDR Project Meeting was held in Bethesda, Maryland. Project grantees, states involved with LTFU, and national partners met to discuss the utility of the LPDR. Appropriate data metrics to better understand the impact of LTFU has on public health was discussed.

Special Edition NCC Collaborator: Advocate Leader Program 2016 May 31, 2016

Nine Advocate Leaders and seven Genetic Counseling Student Mentors participated in the NCC Advocate Leader Program this past March.  As a part of the program, participants were asked to provide reflections on what they gained and observed at the ACMG Annual Clinical Genetics Meeting.  Portions of these reflections, as well as additional information about the program, can be found in this Special Edition of the NCC Collaborator.

NCC Newsletter-June 2016 June 1, 2016

On May 11th, NCC, in partnership with NBSTRN, hosted the NCC/RC NBSTRN LTFU LPDR Meeting in Bethesda, MD.  This meeting, as well as the June Calendar, were discussed in the June 2016 monthly newsletter.

NCC Collaborator: Partnering with Consumers- Pillar of the NCC/RC System July 7, 2016

In order to effectively increase access to genetic services, the family and patient voice must be heard.  Over the past 12 years, the NCC/RC system has worked to ensure that the family perspective is integrated into every level of the system.  The latest edition of the NCC Collaborator details the various ways that the RCs, NCC, and the NGECN have partnered with consumers.

NCC Newsletter-July 2016 July 8, 2016

Highlighted in this month's edition of the NCC monthly newsletter is: the latest NCC Collaborator, events including the SERC/SERGG Annual Meeting, and updates from the NCC Workgroups.

NCC Newsletter-August 2016 August 1, 2016

ACHDNC will be holding an in-person meeting/webcast on August 25th and 26th.  Information about this meeting, August events, and NCC Workgroup Updates are in the August NCC Monthly Newsletter.

NCC is Moving August 15, 2016

The NCC office is moving!  We can now be found at 7101 Wisconsin Avenue, Suite 1101 Bethesda, MD 20814.

NCC Newsletter-September 2016 September 1, 2016

September is Newborn Screening Awareness Month.  The NCC will be highlighting resources developed by the NCC and the RCs that support the newborn screening system on Facebook and Twitter.  Check out the monthly newsletter to learn more.

Year 4 Evaluation Brief September 29, 2016

In partnership with the RCs, the NCC publishes a yearly evaluation brief of NCC and RC activity.  The Year 4 Evaluation Brief highlights the outreach undertaken by the system, the education/training sessions held, inter-regional activities conducted, as well as specific RC activities.  Learn more about the impact of the NCC/RC system today!

NCC Newsletter-October 2016 October 3, 2016

This month's newsletter highlights the Year 4 Evaluation Brief, calendar of events, and workgroup updates. 

NCC Newsletter-November 2016 November 2, 2016

NCC's participation at the ASHG Annual Meeting, monthly calendar, and workgroup updates are featured in this month's newsletter.

NCC Collaborator: Telegenetics the Future Is Here November 22, 2016

Telegenetics is a rapidly evolving tool that genetics and non-genetics professionals can use to reach underserved populations.  This issue of the NCC Collaborator highlights the work that has been undertaken or is currently underway by the NCC/RC system within the field of telegenetics.

State Statues and Regulations on Dietary Treatment of Disorders Identified Through Newborn Screening November 30, 2016

Individuals with genetic disorders, identified through NBS, may require Modified Low Protein Foods (MLPFs), medical foods, dietary supplements, and other dietary treatments as well as enteral feeding supplies. The Catalyst Center, in partnership with NCC, reviewed existing medical foods statutes and regulations to provide an updated, comprehensive review of every state's policy.  The report includes definitions of medical foods, an overview of state coverage, and in-depth examination of each state's (including DC and Puerto Rico) legislation. 

NCC Newsletter-December 2016 December 1, 2016

The newly released updated report on state statues and regulations for medical foods, the latest Collaborator, and the December calendar are featured in this month's newsletter.

2016: Year in Review December 31, 2016

Explore the work conducted by the NCC in 2016 with the 2016: Year in Review timeline.  Learn about reports published, meetings held, and outreach conducted by NCC in 2016.

NCC Newsletter-January 2017 January 1, 2017

Learn about the work conducted by the NCC/RC system in 2016 and explore meetings occurring in 2017 with the January 2017 newsletter.

NCC Newsletter-February 2017 February 1, 2017

In this month's newsletter, learn about the Telegenetics Meet and Greet to be held at the ACMG Annual Clinical Genetics Meeting.

NCC Newsletter-March 2017 March 1, 2017

Attending the ACMG Annual Clinical Genetics Meeting?  Be sure to explore the March newsletter to find out about NCC activities at the meeting.

NCC @ ACMG Meeting March 29, 2017

NCC had a wonderful time at the ACMG Annual Clinical Genetics Meeting.  Find out about NCC activities here.

NCC Newsletter-April 2017 April 3, 2017

Find out about NCC activities at the ACMG Meeting, explore the April Calendar, and learn about NCC workgroup activities with the April newsletter.

NCC Newsletter-May 2017 May 2, 2017

A teaser for the NCC/RC: 2012-217 Special Edition of the Newsletter, Monthly Calendar, and Workgroup Updates can be found in the May newsletter.