We need your help! In 2009, Genetic Alliance was awarded a cooperative agreement to implement sections of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Through this agreement we launched the Congenital Conditions Program, a program that focuses on connecting families who receive a diagnosis for their child prenatally or within the child’s first year of life with information and support. We are currently developing multiple publications for this program; one of these is a compilation of stories that focuses on receiving a diagnosis of a congenital condition.
Genetic Alliance needs your story about receiving a diagnosis of a congenital condition for this compilation! We recognize the importance of sharing stories as a way to share one’s experiences and believe that yours will make a great addition to the publication. By collecting such stories, we believe we will obtain an understanding of the strengths and weaknesses of the current system of information and support for families receiving a diagnosis and where improvements might be made in the future.
You can learn more about the Congenital Conditions Program and the stories compilation at www.geneticalliance.org/congenital. All stories must be submitted be February 28th. To find out how to share your stories for inclusion in the publication, please email Alyson Krokosky at akrokosky@geneticalliance.org.
1 comment:
Dear Jess,
We need your help! In 2009, Genetic Alliance was awarded a cooperative agreement to implement sections of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Through this agreement we launched the Congenital Conditions Program, a program that focuses on connecting families who receive a diagnosis for their child prenatally or within the child’s first year of life with information and support. We are currently developing multiple publications for this program; one of these is a compilation of stories that focuses on receiving a diagnosis of a congenital condition.
Genetic Alliance needs your story about receiving a diagnosis of a congenital condition for this compilation! We recognize the importance of sharing stories as a way to share one’s experiences and believe that yours will make a great addition to the publication. By collecting such stories, we believe we will obtain an understanding of the strengths and weaknesses of the current system of information and support for families receiving a diagnosis and where improvements might be made in the future.
You can learn more about the Congenital Conditions Program and the stories compilation at www.geneticalliance.org/congenital. All stories must be submitted be February 28th. To find out how to share your stories for inclusion in the publication, please email Alyson Krokosky at akrokosky@geneticalliance.org.
Thank you,
Elizabeth
Programs Intern
Genetic Alliance | 4301 Connecticut Avenue, NW | Suite 404 | Washington, DC 20008
Phone: 202.966.5557 x240 | Fax: 202.966.8553
etrandel@geneticalliance.org | http://www.geneticalliance.org
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