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               Mary Wootten, who both volunteers as an Oley Ambassador and works on staff as a program associate, has been selected by the National Organization for Rare Disorders (NORD) as their New York Rare Action Network (RAN) State Ambassador. RAN Ambassadors are volunteers who help build a strong grassroots network of rare disease volunteer advocates within their state.

               Mary has three children, ages 6, 8 and 10, and her two older children have different rare diseases, as well as multiple other health issues. Mary says, “Today rare diseases are getting more attention than ever before, and we have a unique and exciting opportunity to help shape the conversation from the patient and caregiver perspective.”

               Mary welcomes all state residents to share with her their experiences as rare disease patients and/or caregivers living in New York. She’d like to know what challenges you’ve faced, what resources or services you think might be useful to others, and if you’d like to get more involved in activities for the New York RAN.

               Not in New York? Visit rareaction.org/resources-for-advocates/state-action-center to learn more about the program and your state’s RAN Ambassador. Consider volunteering if your state does not currently have a RAN Ambassador.

               Rare Disease Day is February 28. “It’s right around the corner and we need your help!,” says Mary. Think about how you can participate today!


LifelineLetter, November/December 2018

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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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