Down Syndrome Diagnosis Network

The organization I’ve chosen to highlight for the month of July is the Down Syndrome Diagnosis Network (DSDN). This is one of the first organizations I came across after we were told Wyatt more than likely had Down syndrome.

The mission of Down Syndrome Diagnosis Network (DSDN) is to connect, support and provide accurate information to families with a Down syndrome diagnosis. Our vision is that all parents that receive a new diagnosis are provided with accurate, current information through their medical providers every time.

DSDN’s website has so many valuable resources for parents and also for medical professionals. They have print outs with accurate, up to date information discussing how to properly deliver a Down syndrome diagnosis. They also have sample letters for parents to use to write a letter to the physician who delivered their Down syndrome diagnosis. These letters, and the feedback DSDN receives from them, can help every physician give up to date, accurate, positive information when delivering a Down syndrome diagnosis. The first person who speaks to the family about a new diagnosis will have a lifelong impact on them. It is vital physicians deliver the diagnosis well, and DSDN is leading the fight to make sure that happens everywhere. On top of these resources, they also have a shop, blog, and materials parents can request.

DSDN also has a ton of different Facebook groups. They have birth year groups, as well as other more specific groups, such as their heart heroes group. These groups of parents with children close to the same age as mine, going through the same things as mine, have been a great support system. Being the parent of a child with special needs can be isolating and lonely sometimes, especially when you don’t know anyone else who has a child with similar needs. Being able to connect, even just online with so many other parents who truly understand, is a wonderful, vital resource. Along with Facebook groups, DSDN also has a Facebook page I would highly recommend following. There, you can read articles and stay up to date on all things DSDN.

You can get connected with and support DSDN by clicking here

Be sure to also follow my Facebook page, where I will be posting more information and sharing some of DSDN’s content in the coming weeks. You can follow along by clicking here.

 

 


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