Tuesday, September 30, 2008

Help Genetic Counselors help Down syndrome parents

From the National Down syndrome society
Just as we all work to provide medical professionals with information that will enhance their skills in delivering a diagnosis of Down syndrome, there are others within the medical community doing the same thing.
Currently, there is a survey online, written for a Master's thesis project, which hopes to construct practice guidelines for providing information to new and expectant parents receiving a diagnosis of Down syndrome.
The study's author says, "This study combines the complementary perspectives of parents and Genetic Counselors (professionals trained in clinical genetics and counseling skills) for the construction of guidelines to ensure that the first information parents receive about their child's diagnosis is balanced, accurate, and consistent. Your involvement is extremely valuable to healthcare professionals involved in distributing information and resources and those involved in the care of individuals with Down syndrome and their families." Please go online to take this study, and encourage your members to do so, too. This is a terrific place for your voice to be heard!
Click here to participate.


jessica said...

Thanks for posting this. i just shared it with the CDSC's prenatal committee.

Nikki~Down syndrome Storyteller said...

So the ball is rolling on this. How exciting. Thanks for posting.

Anonymous said...

Thanks for posting this. It is an essential survey! I have forwarded it to both of the Ds support groups I am involved with.

Jeanette said...

This came across my DS Association Yahoo group and I took the survey. Thanks for posting it!