The National Coordinating Center (NCC) has just published the December issue of their newsletter, the NCC Collaborator. This issue highlights the needs assessment and strategic planning processes the regional collaboratives and the NCC carried out as they identified priorities and plans for the next funding cycle, which begins in June 2012. To view the newsletter, go to: http://www.acmg.net/current.pdf.

The next webinar of the Time Out for Genetics webinar series, Building an Accurate Family History, Constructing a Pedigree — An Overview for Primary Care, will take place on Thursday, April 26 from 12-12:30pm Central. Reserve your spot now!

This educational webinar series is presented by the Genetics in Primary Care Institute (GPCI) — a cooperative agreement between the American Academy of Pediatrics and the Maternal and Child Health Bureau. The objective of this 10-part webinar series is to increase awareness and education regarding the provision of genetic medicine in primary care practice. It is designed for primary care clinicians, pediatricians, pediatric sub-specialists, family physicians, nurse practitioners, genetic counselors, geneticists, and other stakeholders.

For more information and to register, please visit: http://www.medicalhomeinfo.org/GPCI.aspx#webinar

The Institute for Preventive Medicine and Medical Screening, in conjunction with Women & Infants Hospital of Rhode Island, is presenting a short course covering screening’s 25+ year history, for medical and laboratory personnel, genetic counselors, and policy makers involved in prenatal screening.

• Date: September 7-10, 2012
• Place: Portland Marriott at Sable Oaks, South Portland Maine

Applications are now being accepted for this short course. For complete details, please visit: http://www.ipmms.org/Prenatal-AFP/Prenatal-Screening-Course.html

The Genetics in Primary Care Institute, a cooperative agreement between the American Academy of Pediatrics and the Maternal and Child Health Bureau, is now hosting Time Out for Genetics, a free, educational webinar series. The objective of this 10-part webinar series is to increase awareness and education regarding the provision of genetic medicine in primary care practice. It is designed for primary care clinicians, pediatricians, pediatric subspecialists, family physicians, nurse practitioners, genetic counselors, geneticists, and other stakeholders.

The next webinar, Building an Accurate Family History, Constructing a Pedigree — An Overview for Primary Care, will take place on Thursday, April 26 from 12-12:30pm Central.

Presenters:
Emily Chen, MD, PhD
Bob Saul, MD, FACMG, FAAP
Learning Objectives:

1. State the importance of the family history in the primary care setting for prevention, diagnosis, and management.
2. Demonstrate how to properly collect and interpret a meaningful family history using the pedigree and other tools.
3. Review the importance of engaging patients and families as active partners in the prevention and/or treatment of their condition.

Reserve your Webinar seat at: https://www2.gotomeeting.com/register/486497370

The Center for Telehealth and e-Law (CTeL) is hosting a webinar entitled, “What Does HIPAA Compliant Mean? Can You Be Legal and Use Web-Based Technology for Telehealth?” Rene Quashie, senior counsel in the Washington, DC office of Epstein Becker and Green PC and a valued member of CTeL’s Legal Resource Team, will address the following two questions:

• What do you need to know and what should you ask when somebody says, “This is HIPAA-compliant”?
• Can you do a clinical telehealth encounter through a web-based technology platform (e.g. Skype-like) and meet HIPAA requirements?

The webinar will be held on Monday, April 23, 2012 from 12:00 noon - 1:00 p.m. (EDT).

For more information or to register for the webinar, go to: http://ctel.org/2012/04/hipaa-compliant-and-telemedicine/

The Hawai‘i and Washington State Genetics Programs are two of the five states featured as case studies in the Association of State and Territorial Health Officials (ASTHO)’s Genomics Project. The purpose of ASTHO’s Genomics project is to highlight the critical role state health agencies play in both promoting the appropriate application of genomics to public health practice and for protecting the public from any associated privacy risks. For more information, go to: http://www.astho.org/Programs/Access/Genomics/

The National Center on Birth Defects and Developmental Disabilities, Division of Blood Disorders in collaboration with the National Institutes of Health, National Heart Lung and Blood Institute (NIH/NHLBI) seeks to develop and implement a collaborative pilot project with population-based surveillance of confirmed hemoglobinopathies of both pediatric and non-pediatric populations using the established newborn screening program and other data sources. The purpose of this program is to provide support through CDC cooperative agreements for non-research activities to collect and link data on selected samples of patients for population-based estimates. The program is a pilot and designed as a learning collaborative effort between states with a mixture of characteristics.

To access both the announcement and an application package, go to www.grants.gov and select “apply for grants.” Then select “Download a grant application” and enter the Funding Announcement Number CDC-RFA-DD10-1017.

The Newborn Screening Translational Network (NBSTRN), the Network for Public Health Law, the National Newborn Screening and Genetics Resource Center (NNSGRC), and the Association for Public Health Laboratories (APHL) are jointly presenting a webinar series covering legal issues and related ethical and policy issues concerning secondary uses of dried blood spots and associated data. For more information, click here.

Senator Kerry (MA) is spearheading a sign-on letter in the U.S. Senate to send to the Department of Health and Human Services on the critical importance of including medical foods (formula and foods modified to be low in protein) in the Essential Health Benefits Guidance for the treatment of inborn errors of metabolism. You can view the letter by clicking here: http://www.npkua.org/images/HHS_Signon.pdf

This letter has been circulated on the Democratic Senate office list serv, and now Senator Kerry’s office is asking for our help in getting additional Senators to sign on to the letter. This is a sign on letter - it is NOT asking Senators to cosponsor any bills.

The deadline to help get additional Senators to sign on is Monday March 5th, 2012.

Here is how you can help:

1. Contact your two Senators via phone. You can find out how to contact them by clicking here: http://www.npkua.org/index.php/your-legislators
   Only contact your two Senators; do NOT contact your House Representative.
2. Find out if your two Senators are Democrat or Republican.

• If one or both of your Senators is a Democrat, call the office and ask to speak to the Health Legislative Assistant. Tell them your relationship to medical foods and ask them to sign on to the letter from Senator Kerry’s office on medical foods and essential health benefits that was posted on the Democratic Senate office list serv. You can provide them with another copy of the letter if needed. Tell them to contact Senator Kerry’s office to sign on (they will know the contact information).
• If one or both of your Senators is a Republican, tell them about the letter and ask for help. You can send them the letter, ask them to co-sign and/or ask them if they would be willing to circulate it on the Republican Senate office list serv. Again, if they are willing to co-sign the letter, ask them to contact Senator Kerry’s office.

The Genetic Alliance has created a consumer task force on newborn screening to engage relevant stakeholders with an interest in newborn screening policies, activities, and current events. Members of the Task Force will be trained on issues relevant to newborn screening and will create projects targeting groups who typically are under-informed about the importance of newborn screening. For more information about the task force, go to: http://www.babysfirsttest.org/consumer-task-force.