My 18-month-old daughter has just been diagnosed with a rare blood disorder. How can we learn more about this disorder?
The Missouri Developmental Disabilities Resource Center (MODDRC) offers a wide variety of information about developmental disabilities and low-incidence disabilities. Another service offered by the MODDRC is that of Research Services. Parents can call the MODDRC at 800-444-0821 and ask if there is any information available about their child’s disability. If the information is not readily available in the current information files, the staff will research Internet sources, professional journals, and other academic information to discover what does exist in currently available information. It is helpful if you have the correct spelling of the syndrome or disorder when you call.
You can also request Research Services through the MODDRC’s website at www.moddrc.org by clicking on “Form to Request Info” and then completing and submitting the Information Request. In your request, be sure to include the pertinent information in the “comments” section of the online inquiry form.
Michelle Reynolds, Director of the Missouri Developmental Disabilities Resource Center, University of Missouri-Kansas City
Last update: Wednesday, April 14, 2010