December 2015

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News from NCBDDD Executive Committee
Friends of CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Making Connections in 2016

register here

January 26, 2016 | 2pm-5:30pm
Hyatt Regency Washington on Capitol Hill | 400 New Jersey Avenue, NW
Washington, D.C., USA, 20001

Event Agenda

 

Saving Babies
National Birth Defects Prevention Month

NBDP Month.jpgJanuary is National Birth Defects Prevention Month! Join us in this nationwide effort to raise awareness of birth defects, their causes, and their impact!
Each January, CDC works with partners to raise awareness among women and families on actions they can take to help have a healthy pregnancy. January is also a time to recognize people living with birth defects. Thanks to ongoing medical advancements, children born with birth defects are living longer. These children and their families still need help. They often need specialized treatment, continued care, and strong social support to improve their overall quality of life. Awareness is key. Read more…

Thunderclap

Join the #1in33 Thunderclap to raise awareness of National Birth Defects Prevention Month, once it goes live. Thunderclap is a social media tool that allows supporters to sign up in advance to share a unified message at a specific time via their individual Facebook, Twitter, or Tumblr account. The collective action creates a wave of support – or “thunderclap” – across social media. Our thunderclap will go live on January 20, 2016 at 12PM EST and encourages people to make a PACT for birth defects prevention. Stay tuned for when the Thunderclap goes live.

New Report from the American Academy of Pediatrics: IDEA for Children with Special Educational Needs

It is estimated that 15% of children in the United States have a disability. The Individuals with Disabilities Education Act (IDEA) entitles children with disabilities—from infancy to young adulthood—to a free appropriate public education through early intervention (EI) and special education services. The American Academy of Pediatrics recently published a report, including resources, that helps pediatric health care providers, in partnership with families, ensure that every child in need receives the EI and special education services to which he or she is entitled.

 

Protecting People
10th Cooley’s Anemia Symposium at the New York Academy of Sciences

Anemia Symposium.pngNCBDDD staff joined the Cooley’s Anemia Foundation in October to celebrate the success of their poster presentation at the New York Academy of Sciences meeting on Cooley’s Anemia. The meeting was held in Chicago October 18-21. The poster is a synopsis of work on NCBDDD cooperative agreement between Cooley’s Anemia Foundation and the Division of Blood Disorders focusing on patient outreach. The title of the poster is “Outreach Methods Used to Locate Patients with Thalassemia in the United States.”

Pictured: Craig Butler, National Communications Director, Cooley’s Anemia Foundation (CAF); Kathleen Durst, social worker, CAF; Sandra Gilbert, Patient Outreach Director, CAF; Cynthia Sayers, CDC Project Officer; Gina Cioffi, National Executive Director, CAF; Anthony Viola, CAF President; Amy Celento, CAF Vice President

National Blood Clot Alliance Launches New Online Support Community, Runs Successful Pandora Radio Promotion

The National Blood Clot Alliance (NBCA) recently launched its new online Stop the Clot® Support Community, powered by Inspire, as an extension of its new Women & Blood Clots program, which NBCA is orchestrating in partnership with the Alexandra L. Rowan Memorial Foundation. This new online support community provides women with a safe and supportive space where they can gather online to exchange information and share their blood clot experiences. In time, discussions there will expand to reflect the diversity of all people affected by blood clots and clotting disorders. You can join the conversation here: NBCA Online Support Community. Read More…

 

helpingChildren@2x_bacgroundHelping Children
Medication Prescribing for Pregnant and Childbearing-aged Women: Resources for the Practicing Clinician

January 26, 2016 | 2:00 p.m. -3:00 p.m. Eastern

Taking some medications early in pregnancy—often before women know they are pregnant—can increase the risk for some birth defects and other poor pregnancy outcomes. While the public health message remains the same—pregnant women should not stop or start taking any type of medicine without first talking with a health care provider—the information available to health care providers to guide and support the decision making process is limited. A webinar on January 26 at 2pm ET will provide an overview of what is known about medication safety during pregnancy, relevant clinical considerations for prescribers and pharmacists and resources to help counsel women regarding treatment decisions before and during pregnancy. Click here to register today!

Moving Mountains

Parent support and advocacy is at an all-time high in the United States. It is that support that drives parent advocates like Sherri Romblad to strive for better results at a local, state and national level.   As a parent of a child with a late diagnosis of hearing loss it has been Sheri’s mission to make sure that all children, regardless of the age of diagnosis, receive immediate services in order to give them the best opportunity to succeed. Sheri believes no child should be left behind due to a diagnosis related to a birth defect. Read More…

Article submitted on behalf of the Family Liaisons to the Friends of NCBDDD

Pediatric Medical Home Implementation Resource Tutorials Available for Viewing!

The National Center for Medical Home Implementation (NCMHI) created video tutorials describing how to find and use three popular resources available to assist with implementation of pediatric medical home: the “Building your Medical Home” online resource guide, the new NCMHI Web site, and a collection of state-based pediatric medical home resources created in collaboration with the National Academy for State Health Policy. View the resource tutorials here!

 

Improving Health No BackgroundImproving Health
Creating a Care Center for Women with Disabilities

According to the Centers for Disease Control and Prevention (CDC), approximately 27 million women in the United States have a disability. Too often, these women face overwhelming barriers to basic gynecologic and preventive health care.Women with disabilities are far less likely to receive the recommended screening tests and regular preventive care due to inaccessible medical facilities and equipment. UPMC and Magee-Women’s Hospital of UPMC have been leaders in providing access to preventive health care services to women with disabilities. As one of the first in the nation — and currently one of only a handful of facilities nationwide — to offer specialized gynecologic and breast care to women with disabilities, the center at UPMC now serves as a national model. Read More…

 

Public Health is for Everyone

Public Health is for Everyone is new, one-stop resource to increase the capacity of public health professionals to create programs that benefit entire communities, including people who have a disability. Users can search and browse disability and health related resources by their interests and professional needs. Resource topics include: Nutrition, Health care access, Physical activity, Emergency preparedness, Obesity, Accessibility, Tobacco, and general inclusion issues. Practical, hands-on resources such as field guides, factsheets, checklists, brochures and other tools are featured. To check out the new Public Health is for Everyone toolkit, please visit www.phetoolkit.org.

Do you have a practical free resource to share? Submit a resource to further develop Public Health is for Everyone. Public Health is for Everyone was highlighted at the American Marketing Association Nonprofit Marketing Conference in July 2015 and in the Nation’s Health newsletter, October 2015 issue.

News from NCBDDD
Executive Committee
Champions
NCBDDD’s Social Media Corner
How to Add NCBDDD Connect Badge to E-mail Signature:
  1. To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:
  2. Open Microsoft Outlook
  3. Go to File > Options > Mail > Signatures
  4. Right click the graphic below and select “copy”
  5. Paste the graphic into your desired signature in the “Edit signature” field
  6. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
  7. Be sure http://www.cdc.gov/ncbddd/connect/index.html is listed in the URL box and hit OK

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Submit Here
button to submit articles to AUCD 360 form News items may be submitted for consideration via email to acostalas@aucd.org. Send in updates on conferences, meetings, special awards and journal or research announcements for the next edition of the Friends of NCBDDD E-Newsletter! Submit program highlights with a short summary of 150-200 words to Anna Costalas by 1/15/2016. Photos and web links are encouraged!!

AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910

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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