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Focus on Rare Diseases
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 Consumers, advocates gather at NYS Capitol to

honor Rare Disease Day

            Oley staff members Lisa Metzger and Mary Wootten, Mary’s daughter, Natalie, and others in the rare disease community visited the New York State Capitol on February 28 to watch Assemblyman John McDonald champion the NYS Rare Disease Day Resolution.

 

               According to the National Organization for Rare Disorders (NORD), a disease is considered rare if less than 200,000 are diagnosed. There are currently about 7,000 rare diseases on NORD’s list.

 

               Mary also serves as NORD’s Rare Action Network NYS volunteer Ambassador. Rare Disease Day falls on February 28 of each year.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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