Down syndrome resource materials for medical professionals and. Understanding a down syndrome diagnosis this booklet presents information on available health and education services, common medical conditions for babies with down syndrome, information about pregnancy options, and helpful resources about the condition. Did you find what you were looking for on this webpage. For expectant parents immediately after receiving a confirmed prenatal diagnosis or results indicating high chances for down syndrome. In 2009, the booklet was selected by the prestigious joseph p.
Understanding a down syndrome diagnosis is often described as a lifeline for families learning about a diagnosis, and i believe, as did my mother, that expectant parents need that support and information right away. Understanding a down syndrome diagnosis an accurate, balanced, and uptodate booklet for use when delivering a diagnosis of down syndrome and is part of the national center for prenatal and postnatal resources at the university of kentuckys human development institute hdi. Understanding a down syndrome diagnosis by stephanie hall meredith. Family perspectives about down syndrome brian skotko. Celebrating people living with down syndrome this compilation of 56 encouraging and eyeopening short writings by a variety of authors across the globe celebrates the lives of people living with down syndrome. Understanding a down syndrome diagnosis booklet available through kennedy foundation and kentuckys human development institute. Understanding a down syndrome diagnosis booklet compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome society, and the national down syndrome congress. Free booklet understanding a down syndrome diagnosis. Sue levine occasionally gets remunerated from down syndrome nonprofit.
Foundations understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. Understanding a down syndrome diagnosis as part of our medically speaking. The booklet is intended for pregnant women first finding out about a prenatal down syndrome diagnosis. Understanding a down syndrome diagnosis is often described as a lifeline for. In september 2010, a group of influential and respected organizations completed input on a booklet, understanding a down syndrome diagnosis, which represents a consensus among. This booklet offers basic information about down syndrome. They do truly amazing work with outreach to physicians and expectant parents, and have recently released a spanishlanguage booklet. Please understand that your emotional reactions are normal. Recently, members of the nsgc received a booklet called understanding a down syndrome diagnosis, full of lovely pictures of children with down syndrome and their families, accompanied by a factual but largely positive text according to some studies, siblings of children with down syndrome tend to be more compassionate and welladjusted than their peers. Receiving a diagnosis of down syndrome through prenatal testing can be unexpected, confusing, and difficult for many parents. There are two types of tests for down syndrome that can be performed before. General audience 1 parentscaretakers of young children 1 format.
Most of these screening tests involve a blood test and an ultrasound sonogram. Ds4302 easyto understand information for families who receive a pre or post natal diagnosis of down syndrome in english and spanish. Understanding a down syndrome diagnosis is an accurate, balanced and uptodate booklet for use when delivering a diagnosis of down syndrome. Findings from these studies are highlighted and presented in this booklet. To raise down syndrome awareness, get the information. Some of these include, but are not limited to, and understanding a down syndrome diagnosis, available as a free ebooklet via, and the first call program provided by many local and state down syndrome groups. Understanding a down syndrome diagnosis on apple books. Expectant parents down syndrome association of wisconsin. It looks like the producers intend that the booklet be distributed to patients by their obstetricians after a prenatal test suggests that the fetus has down syndrome.
Understand your pediatric patients down syndrome diagnosis. The booklet continues to be available in print and as a free digital download through the lettercase program at the university of kentuckys human development institute. Over 25,000 copies of understanding a down syndrome diagnosis have been distributed nationwide since 2008. Understanding a down syndrome diagnosis is now available as a free digital book.
Contact us to request your free copy and dsfcs welcome packet. Undergoing prenatal screening and diagnostic testing for down syndrome is a very. Down syndrome occurs within all racial, cultural and economic backgrounds. New booklet out for expectant parents of child with down. Fathers joy celebrating the blessing of children with. This booklet, printed in english and spanish, is endorsed by professional and advocacy organizations alike. Understanding a down syndrome diagnosis translations lettercases booklet, understanding a down syndrome diagnosis. Medical providers and expectant parents can also view the booklet online at. A booklet for parents who receive a prenatal diagnosis. Understanding a down syndrome diagnosis the arc of. The canadian down syndrome society has written this booklet in plain language to teach people with down syndrome about down syndrome.
Foundation, and more than 50,000 copies have been distributed throughout the us. Understanding a down syndrome diagnosis is a nationallyrecommended booklet that is administered by hdi a university center for excellence in developmental disabilities and owned by the joseph p. Whilst in the earlier years those born with a heart condition did less well. Understanding a jacobsen syndrome diagnosis bifold. Down syndrome resource materials for medical professionals. What does a diagnosis of down syndrome mean to our family. Massachusetts general hospital, down syndrome clinic director when expectant parents across the country receive a prenatal diagnosis, they consistently deserve to receive accurate and uptodate information about the condition. This pamphlet will explain how breastfeeding can be a valuable and. Im happy to share that last week we released a free, digital version of our booklet, understanding a down syndrome diagnosis. These procedures, which carry up to a 1% risk of causing a spontaneous termination miscarriage, are nearly 100% accurate in diagnosing down syndrome. The best resource for expectant parents receiving a diagnosis is the kennedy foundations diagnosis booklet, understanding a down syndrome diagnosis.
How do we order the understanding a down syndrome diagnosis booklet, and other resource materials. Understanding whats difficult about understanding a down. In this booklet, those individuals will receive the most up to date information about what having a child with ds might be like for them as well as a discussion of other options including termination and adoption. Hdis national center for prenatal and postnatal resources. Women who are or may become pregnant need uptodate information about down syndrome ds. Compiled by the down syndrome consensus group with input from the national society of genetic counselors, the american college of medical genetics and genomics, the american college of obstetricians and gynecologists, the national down syndrome. Womens knowledge, attitudes, and beliefs about down. To learn more about lettercase, which is part of the national center for prenatal and postnatal down syndrome resource at the university of kentuckys human development institute, click here. National booklet understanding a down syndrome diagnosis the 2011 edition of understanding a down syndrome diagnosis contains the latest medical and developmental information about people with down syndrome as well as local and national resources. Offers the kennedy foundations understanding a down syndrome diagnosis booklet that was prepared with assistance by representatives of the national medical and down syndrome organizations.
They are the ones who produce the outstanding books on understanding a down syndrome diagnosis. Foundation first call committee as the gold standard for prenatal information about down syndrome. Understanding a down syndrome diagnosis washington post. Attitudes of mothers of children with down syndrome. Understanding implications of prenatal testing for down. Parents who have a child newly diagnosed with down syndrome can request a copy for free through lettercase or by emailing the washington state department of health. Understanding a down syndrome diagnosis booklet arup consult. A website with a resource directory for new and expectant parents learning about down syndrome.
Aucd understanding a down syndrome diagnosis booklet. This free web app offers accurate, uptodate, and balanced information about down syndrome for medical providers and new and expectant parents. Resources for women with a prenatal diagnosis of down. National association for down syndrome multicultural. Open file for understanding a down syndrome diagnosis booklet feedback.
The national down syndrome society and lettercase have joined forces to produce understanding a down syndrome diagnosis updated in 2017 and available online for free. Finally, we have that information through the booklets created by lettercase. Expectant parents madison area down syndrome society. Lettercase the national center for prenatal and postnatal. Parenting my kid who has down syndrome isnt all rainbows.
Understanding a down syndrome diagnosis resources for families and providers about down syndrome resources for both families and providers offering information about down syndrome are listed below. Recently, the national down syndrome society and the national down syndrome congress announced the selection of a booklet understanding a prenatal down syndrome diagnosis as a gold standard. If arup consult does not answer your test selection and interpretation questions, or if youd like to suggest ways to improve content or usability, please leave a message for the arup clinical content. Foundations understanding a down syndrome diagnosis booklet that is printed and distributed by lettercase. Asking women about their knowledge, opinions, resources, and information needs on the topic of ds is an important precursor to develop effective strategies for education.
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