NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Norm's family was very fortunate to get a correct diagnosis within a couple of days of Alison's birth in 1989. When Alison was transferred to a top hospital in Providence, RI, "A very knowledgeable geneticist was able to see her symptoms and diagnose her right away," he explained. From then on the family knew that they were going to have a rough road ahead. 


Norm immediately got started researching ways to help Alison and learn more about CdLS. Norm was aware of NORD and called the office to learn more about CdLS. He was referred to the CdLS Foundation, Inc., one of NORD's member organizations that specializes in the rare disease. He then called the foundation and was given an abundance of helpful information by one of the founders and Executive Director, Julie Mairano. 

Read the full story at: http://blog.rarediseases.org/cdlsawarenessday/#sthash.azlYWteR.dpuf


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