What is a Rare Disease Difference Maker™?

 

At Engage Health, we have the privilege of working alongside some of the biggest movers and shakers in the rare disease community. The Rare Disease Difference Maker™ project is a way to recognize and celebrate the leaders within these spaces; but the initiative was also created to shine the limelight on the “behind-the-scenes” heroes of the rare disease community: the families, teachers, pastors, researchers, healthcare providers, and all those who work, care for, and love those with rare diseases.

The Rare Disease Difference Maker™ project was first conceived when Engage Health founder and CEO Patti Engel noticed that efforts by these individuals were widely appreciated, but ultimately under-recognized. After 25 years of working in the rare disease industry, Patti had gained respect and appreciation for just how difficult it can be to be diagnosed with or care for someone with a rare disease. Patients with rare disease face a myriad of challenges: difficulty finding a diagnosis, seeking out knowledgeable caregivers, and handling complex medical situations, which all lead to significant impacts in the quality of their everyday life.

Nominating someone as a Rare Disease Difference Maker™ serves as a way for rare disease patients and their families to acknowledge someone who has made a positive difference in their life with any of these aspects of their disease; whether it is a teacher or therapist who helps on a day-to-day basis, the friend who ensures that a caregiver gets a break, or a family member who provides unending support. The goal of the project is ultimately to draw attention to those who are making substantive, real-life differences in the lives of people with rare diseases. These nominations are open to ALL individuals who have made a difference for you.

Within the last few months, the Rare Disease Difference Maker™ project has blossomed from a small idea into an eye-opening initiative. Nominees range from the United States to Canada and Europe, and from founders of organizations to patient bloggers and patients themselves. Our hope is that everyone, whether they are a part of the rare disease community or not, can hear the stories of these Rare Disease Difference Makers™ and be inspired to make a difference.

Who’s made a difference in your rare disease? Whether it’s a teacher, parent, pastor, friend, or physician, if you want to recognize someone who has impacted your life, click here to nominate them! Not only do we hope to recognize those who have made a difference in the rare disease community, but we also want to inspire others with practical and applicable ideas of how they can make a real, lasting impact in the community.