HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program

Background Information

American College of Medical Genetics Annual Clinical Genetics Meeting

March 27-31, 2012

Charlotte, North Carolina

In 2004 and 2007, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to seven Regional Genetic Service and Newborn Screening Collaborative (RCs) and a National Coordinating Center (NCC) as part of larger on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services.

The NCC is formed as a partnership with the GSB/MCHB/HRSA through a cooperative agreement with the American College of Medical Genetics (ACMG), and it supports the work of the HRSA Genetics Collaboratives (RCs) in a variety of ways. Through its role as a conduit for bringing educational opportunities to the RCs and facilitating their liaising with national organizations, the NCC is pleased to partner with the RCs to offer Advocate Leaders who are active in their RCs the opportunity to attend the 2012 ACMG Annual Clinical Genetics Meeting, through a special program seamlessly integrated into the overall conference.

Through this program, at least one Advocate Leader selected by each RC will attend the conference on a scholarship, with access to all meeting activities as well as unique opportunities to meet and network with representatives from healthcare, industry, academia, research, government, as well as other genetics and newborn screening Advocate Leaders. The program is built on the highly successful model begun by Genetic Alliance in 2006.

About ACMG:

The American College of Medical Genetics (ACMG) is the premier professional organization in medical and clinical genetics. Its 1400+ members represent the clinical genetics workforce (physicians, genetic counselors, nurses, laboratory directors and others) in North America. ACMG members work to make genetic services available to all and to improve the health of the public. The ACMG and its members are also active in promoting the development and implementation of methods to diagnose, treat, and prevent genetic disease, and they educate health professionals, students, and the public about genetic advances and services.

What is the HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program?

The HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program will broaden consumer advocate leaders' perspective of medical genetics. Each RC will work to identify Advocate Leaders who will be awarded support to attend the ACMG Annual Clinical Genetics Meeting March 27-31, 2012 in Charlotte, NC. They will also build upon their conference experiences by engaging with NCC and RC leaders, ACMG leadership, and medical genetics professionals; in addition, they will enjoy mentoring and the personal ambassadorship of genetic counseling graduate students from the University of Arkansas for the Medical Sciences. Many of these interactions will occur in intimate, collaborative forums, designed specifically for the Advocate Leaders, and occurring throughout the meeting. For more information about the ACMG Annual Clinical Genetics Meeting, please visit http://www.acmgmeeting.net.

How will advocates benefit by participating in the HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program at the ACMG Annual Clinical Genetics Meeting?

Advocate leaders will receive waived, full registration to the meeting; access to all program activities, including the Opening Reception, Exhibit Hall, Poster Sessions, and Educational Sessions; access to the American College of Medical Genetics President, Board of Directors, Committees Chairs, and leaders in the provision of genetic services; and the opportunity to interact with other advocates who have a special interest in genetic services. Staff from the NCC and the RCs will be available to support the program participants before, during, and after the meeting.

What resources will you offer to make sure I get the most out of each day?

Advocate leaders will gather for daily, informal briefings with several genetics professionals to learn about highlights or important and significant events in the meeting program during that day. These forums provide time and space for advocates to ask questions of the genetics professionals and share impressions and thoughts about presentations at the meeting. In the past, dynamic conversations have ensued, leading to energetic brainstorming around collaborative solutions and improvements for health systems to better meet the needs of individuals, families, and communities.

How does the HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program benefit the newborn screening and medical genetics communities?

Individuals in the medical genetics and newborn screening communities obtain a greater understanding of the impact of their work in the broader healthcare system through engaging with individuals who have a different perspectives, and often times different solutions, to emerging challenges to integrating genetics into healthcare, research, and public health. Medical genetics and newborn screening professionals acknowledge advocate leaders as an invaluable resource and voice. Together we can create policies critical to developing and broadening access to services, advancing research, and enabling translation.

How do I apply? What are the requirements?

Fill out the application on our RC website [URL HERE] or contact XX for an application. Applications are due to [NAME/EMAIL, ETC] by Friday, February 3, 2012. Applicants will be informed whether they were selected by February 10, 2012. The HRSA Genetics Collaboratives’ Advocates Leaders Partnership Program provides you with waived, full registration to the meeting, up to a $545 value. You will also be reimbursed at least $250 for transportation and accommodations. In addition, your RC may have funds to supplement those provided by the program. (Please note: you will be required to cover your own travel and lodging upfront.)

To be eligible for reimbursement participants must:

A) Attend the entire five-day meeting (3/27 – 3/31/12);

B) Following the conference, complete a program evaluation survey and submit a two-page written report to your RC about either a presentation or poster you found to be of interest and describe how what you learned during the week is relevant and applicable to the goals for your RC and your contributions as an Advocate Leader,

C) Submit an expense report with receipts by Friday, April 14, 2012 (expenses can be submitted for transportation, hotel, and airfare only; receipts must be dated Tuesday, March 27, 2012 through Saturday, March 31, 2012). Instructions and paperwork for expense submission will be distributed on-site. IMPORTANT NOTE: Your RC may have different travel requirements; please check in with them to determine how to proceed before making your airfare and hotel reservations. At a minimum, airfare must be reserved 14 days in advance of travel.

Priority will be given to individuals who previously have not participated in an Advocates Partnership Program. People who potentially can be members of ACMG in the following categories are not eligible to apply:

• MD, PhD, Laboratory Director, Corporate Executive

• Genetic Counselor, Nurse, Dietitian, Physician Assistant, Laboratory Technologist/ Technician

• Emeritus and Honorary

• Fellow, Resident, Trainee, Student

Optional: Your organization may wish to exhibit at the meeting. If you do exhibit, your organization will need to send additional staff, since the booth must be staffed at all times, and this program precludes staying in the exhibit hall for extensive periods. For more information, please visit http://www.acmgmeeting.net/acmg2012/public/Content.aspx?ID=492&sortMenu=108000.