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La Primera Prueba de su Bebé (Baby's First Test) ofrece cambios y recursos en nuevos sitios

Washington, DC - 28 Abril 2015 - Con mucho felicidad, La Prueba Primera del Bebé (Baby’s First Test) comparte los detalles en sitios nuevos para (en Español) y (En Inglés).

La Primera Prueba del Bebé es el centro nacional para recursos educativos. La ofrece acceso a información fiable y precisos a padres, proveedores médicos, y el público sobre el proceso de las evaluaciones de recién nacidos. Los sitios ofrecen videos educativos e otros oportunidades para profesionales médicos a apoyarse familias durante el proceso de la evaluación de recién nacidos. Hay contactos directos para programas local, de estado, y nacional para padres y familias de esperar.Washington, DC - July 15, 2013 - Children's National Medical Center, through support from Baby's First Test, has created videos in five languages to help new and expectant parents learn the importance of screening newborns for potentially critical heart disease. The Heart Smart series is available online - now in Arabic, Chinese, French, Russian, and Spanish, as well as English - a Children's National and Baby's First Test.

Por favor, lea más aquí.

Nuevos videos en cinco idiomas instruyen a los padres de familia sobre la evaluación de recién nacidos para los defectos cardíacos

Read the full press release here.

Comité asesor federal recomienda la evaluación de la enfermedad de Pompe para los recién nacidos

WASHINGTON, DC – May 17, 2013 – In a long awaited meeting, the Secretary's Discretionary Advisory Committee for Heritable Disorders in Newborns and Children (DACHDNC), in a vote of 11-2, recommended the addition of Pompe Disease to the recommended uniform newborn screening panel (RUSP). The letter to the Secretary will highlight the need for states currently implementing Pompe screening to coordinate activities and help establish a framework for state-based screening. The committee considered both the significant benefit to screening for infantile as well as the need for more studies about the optimal management of those with late onset.

Read the full press release here.

Baby’s First Test (La primera prueba de su bebé) continúa con fomentar programas innovadores

WASHINGTON, DC – March 05, 2013 – Baby’s First Test, a Genetic Alliance project, is pleased to announce partnerships with five institutions that will carry out innovative projects increasing awareness of newborn screening or implementing novel solutions to challenges in the newborn screening system. Each project will receive funding of up to $20,000. This is the third year that Baby’s First Testtm has supported innovative projects at the local, state, and national level.

Read the full press release here.

Baby’s First Test (La primera prueba de su bebé) celebra su primer cumpleaños

WASHINGTON, DC – September 13, 2012 – the nation's educational resource center for newborn screening celebrates its first birthday during Newborn Screening Awareness Month this September.

Read the full press release here.

Genetic Alliance aplaude la decisión del Tribunal Supremo sobre la ley de salud nacional, Affordable Care Act

Washington, DC – June 28, 2012 – Today, the Supreme Court upheld the Patient Protection and Affordable Care Act, which contains several provisions pertaining to newborn screening.

Read the full press release here.

Se unen Children’s National Medical Center y Baby’s First Test para promover la evaluación de la enfermedad cardíaca crítica en recién nacidos

Washington, DC -- Today, Children's National Medical Center and Baby's First Test released two videos on screening for critical congenital heart disease (CCHD) using pulse oximetry (pulse ox) in newborns. The videos, produced for parents and clinicians respectively, were designed to forward knowledge about the test.

Read the full press release here.

Anunciamos a los primeros embajadores blogueros de Baby’s First Test (La primera prueba de su bebé)

WASHINGTON, DC – May 01, 2012 – Mom bloggers will write about their personal newborn screening experience and the resources available on the newborn screening Clearinghouse, Baby’s First Test. These blogs will be posted both on their individual sites and the Baby's First Test website as well. Read the first of this series of blogs here.

Read the full press release here.

Artículo destaca a Baby’s First Test en la publicación Lab Matters, la revista trimestral de la Association of Public Health Laboratories.

Download the pdf of Getting the Word Out: New Website Educates About Newborn Screening.

La Secretaría de Salud y Servicios Humanos adopta nueva recomendación sobre la evaluación de recién nacidos

WASHINGTON, DC – September 22, 2011 – Secretary of Health and Human Services, Kathleen Sebelius, adopted the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) that Critical Congenital Heart Disease (CCHD) be included on the Recommended Uniform Screening Panel (RUSP). RUSP is the national recommendation that informs states of the congenital conditions that should be included in each state newborn screening program. SACHDNC put this recommendation forward last year, after following the robust evidence review process they have pioneered. After receiving additional review from the Interagency Coordinating Committee on Screening in Newborns and Children, Secretary Sebelius determined that intervention for this condition during the newborn period is critical to saving lives.

Read the full press-release (PDF)

Genetic Alliance lanza recurso público sobre la evaluación de recién nacidos

NEW YORK (GenomeWeb News) – Genetic Alliance has launched an online resource that will provide a range of information on newborn screening tests that it developed with several partnering organizations at the behest of the US Department of Health and Human Services.

The web resource, Baby's First Test, is designed to increase awareness of newborn screening and to serve as an information hub for parents, health care providers, and other stakeholders.

See the full article at GenomeWeb (free registration required)

EP Cover

In the August 2011 issue of Exceptional Parent magazine, Genetic Alliance's monthly column discusses efforts to improve the visibility of newborn screening issues, including Baby's First Test.

Nuevo recurso, Baby’, informa a los padres y al público sobre la evaluación de recién nacidos

New Resource Informs Parents and Public about Newborn Screening (Press Release, PDF), September 21, 2011


Para mayor información, comuníquese con Natasha Bonhomme en [email protected].