Greetings from the NCBDDD Chair
 Dear Friends,
We are excited to share a draft of our shared Friends of NCBDDD 2015 Strategy Overview for the Friends. This version reflects the input from the working groups at our meeting last month and the Executive Committee’s comments. Now it is your turn to comment! Please review the attached draft and submit any comments that you have to my attention at agriffen@aucd.org on or before January 9, 2015.
Please continue to reach out to your thematic area Champions listed below with other thoughts or comments you may have. The Champions and the Executive Committee will be meeting with CDC NCBDDD leadership to continue development of our shared 2015 strategy.
Thematic Area Champions
Saving babies through birth defects prevention and research
Diane Wilkinson, March of Dimes
Kerri Wade, Association of Women’s Health, Obstetric and Neonatal Nurses
Helping children live to the fullest by understanding autism and other developmental disabilities
Pat Johnson, American Academy of Pediatrics
Adriane Griffen, Association of University Centers on Disabilities
Protecting people and preventing complications of blood disorders
Katie Verb, Hemophilia Federation of America
Randy Fenninger, National Blood Clot Alliance
Improving the health of people with disabilities
Roberta Carlin, American Association on Health and Disability
Sara Struwe, Spina Bifida Association
Please join me in thanking the outgoing members of the Executive Committee: Craig Mason, Vice Chair; Mary Andrus, Member at Large; Emil Wigode, Advocacy Co-Chair; and Sarah Yates Membership/Communications Chair. Our new Executive Committee will rotate in as of January. We will welcome yours truly as the incoming Chair, Sara Struwe from the Spina Bifida Association to the role of Vice Chair, Jennifer Li from the National Association of County and City Health Officials to the role of Membership Chair, along with two Members at Large: Phil Cross representing the National Birth Defects Prevention Network and Kathy Brill, the Co-Founder and Executive Director of Parent to Parent, USA. We look forward to working with this fantastic group as we move forward with our 2015 strategy plans.
We also wanted to remind you to use the Friends member directory to reach out to each other. The whole really is greater than the parts!Lastly, happy holidays to you and yours! We truly appreciate all that you all year long.
Best regards,
Adriane K. Griffen, DrPH (c), MPH, MCHES
Chair
News from NCBDDD
Tune In to CDC’s Public Health Grand Rounds on Birth Defects
On January 20, 2015, CDC will debut a session titled “Understanding the Causes of Major Birth Defects: Steps to Prevention.” Experts in birth defects research will present an overview of current and historical efforts to understand the causes of major birth defects and explore the challenges to translating findings into effective prevention efforts. For more information on CDC Public Health Grand Rounds and upcoming session topics please visit http://www.cdc.gov/cdcgrandrounds/.
Webinar Save-the-Date: Reproductive Issues in Women with Bleeding Disorders
 Thursday, January 22, 2015
2:00 – 3:00 pm ET
In this webinar, Dr. James will discuss the key issues for women of reproductive age who have bleeding disorders. Women with bleeding disorders are at risk for the same reproductive issues that affect all women. However, women with bleeding disorders are disproportionately affected by conditions that occur with bleeding and are also at risk of having a potentially affected infant. Menorrhagia, or heavy menstrual bleeding, can begin with the very first menstrual period (menarche) and is the most common symptom that women experience. During pregnancy, women with bleeding disorders may be at an increased risk of bleeding complications. At the time of childbirth, women with bleeding disorders are more likely to experience excessive bleeding after delivery, called postpartum hemorrhage, particularly delayed or secondary postpartum hemorrhage.
Read more…
Online Curriculum for Nurses, Nurse Practitioners, Physician Assistants, and Pharmacists
Continuing Education Available on the Diagnosis and Treatment of Blood Clots & Clotting Disorders
Need continuing education hours before year-end? The National Blood Clot Alliance (NBCA) offers free continuing education hours through an online curriculum for nurses, nurse practitioners, physician assistants, and pharmacists to help increase knowledge about the diagnosis and treatment of blood clots and blood clotting disorders.
This course, entitled Stop The Clot: What Every Healthcare Professional Should Know, provides ease of use for busy healthcare professionals who want to enrich their knowledge about deep vein thrombosis (DVT) and pulmonary embolism (PE) at their own individual pace and at times convenient to their schedules.
NBCA developed this online curriculum to contain five lessons: 1) Basics of Clotting, 2) Basics of Thrombophilia, 3) Anticoagulant Medications, 4) Post-Thrombotic Syndrome/Pulmonary Hypertension, and 5) Prevention of Venous Thromboembolism. A post-test follows each lesson and contact hours are available upon completion of all five lessons. To learn more about the curriculum, visit this link: http://www.stoptheclot.org/learn_more/curriculum.htm.
This curriculum is a product of the cooperative agreement with NBCA and Division of Blood Disorders at the National Center on Birth Defects and Developmental Disabilities at CDC. For more information about this curriculum, please send an e-mail to info@stoptheclot.org.
Read more
Friends of NCBDDD Workgroup Meeting
 Many thanks to all who participated in our Friends of NCBDDD working meeting! View working meeting materials below:
News from Partners
What to Know When Assisting a Consumer with an Autism Spectrum Disorder
The American Association on Health and Disability (AAHD) is pleased to announce the publication of a new fact sheet for the National Disability Navigator Resource Collaborative (NDNRC). “What to Know When Assisting a Consumer with an Autism Spectrum Disorder” is intended to help Navigators identify what issues are unique to consumers with autism spectrum disorder so that they can assist them as they make decisions related to their healthcare coverage. This fact sheet represents the first in a series of new fact sheets that the NDNRC will be releasing that will provide navigators and other enrollment specialists with information they need to help specific populations within the disability community. Some of the other populations the fact sheets will cover are intellectual disabilities, mental illness and multiple sclerosis. The entire list of fact sheets is available here.
The NDNRC is an initiative aimed at providing cross-disability information and support to Navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information when selecting and enrolling in insurance through the Affordable Care Act Marketplaces. The NDNRC website can be found at: http://www.nationaldisabilitynavigator.org/.
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The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. For any questions regarding this edition or previous editions please contact Anna Costalas
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