In the course of working in the rare disease space for the past 25 years, I have been humbled by the stories of countless individuals who have made a real and meaningful difference to groups and to individual patients/families impacted by rare diseases.

Sometimes their contributions are far-reaching, such as the formation of an initiative that impacts national policy.  Other times their contributions are on a more personal level, such as the friend that provides a much-needed break for the parents of a newly diagnosed patient. Many times the individuals who make a difference are "unsung heroes" -- not only are they not recognized, but we miss the opportunity to inspire and model for others activities that make a difference.  

For these reasons, we have initiated the Rare Disease Difference Maker®
 project.  Through this we will recognize these individuals - not only as a thanks for their efforts but also to provide others with real and meaningful examples of how they might help.

Please help by nominating your choice - if you have more than one Rare Disease Difference Maker®, revisit this site and share them all!  Please hit "next" to provide your nomination, going all the way to the end and clicking "done" to submit your response.

Thank you for helping to recognize those who have made a difference in rare diseases!  

Patti Engel
President and CEO
Engage Health, Inc.


Stuck? If you have any questions, or have trouble completing your nomination, please email Skyler Jackson (sjackson@engagehealth.com) and we'll be happy to assist.