In the course of working in the rare disease space for the past 25 years, we at Engage Health have been humbled by the stories of countless individuals who have made significant contributions to the field, to disease groups and to individual patients/families impacted by rare diseases. Many are “unsung heroes” working tirelessly, and often without recognition. We would like to take the time to recognize these individuals – researchers, physicians, organization leaders, parents, teachers, friends and others who have proven that they are Rare Disease Difference Maker™.
Through this program, we hope to recognize these Rare Disease Difference Makers and inspire others with practical and real-life ideas of how they can make a real, lasting impact in the community. Click below to learn how each of these individuals have made a difference in the rare disease space. Click HERE to nominate your Rare Disease Difference Maker.
Dean Clifford
Epidermolysis Bullosa (EB)
Michele Rhee
Farber Disease
Rob Long
Uplifting Athletes
JD Faccinetti
Acromegaly, Pituitary World News
Ben Munoz
Arteriovenous Malformation
Brittany Cocilova
BrandStar
Carri Levy
BrandStar
Ilana Jacqueline
Primary Immune Deficiency Disease
Marilyn Schanbeck
Undiagnosed
Teri Koerner
Snyder-Robinson Syndrome
Laurie Sterner
The Butterfly Fund
Robb Freed
Epidermolysis Bullosa
Jennifer Champy
Tracheobronchomalacia
Daphne Adelman
Acromegaly
Mike Schmidt
Osteogenic Sarcoma
Cara O’Neill
Sanfilippo Syndrome (MPS III)
Marybeth Krummenacker
Cystinosis
Paul Martinez
Epidermolysis Bullosa (EB)
Melissa Hogan
MPS II
