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

Abigail Ostrea

Gaucher’s Disease

Little Miss Hannah Foundation

Erica Barnes

Metachromatic Leukodystrophy (MLD),

Chloe’s Fight

Rob Long

Uplifting Athletes

JD Faccinetti

Acromegaly, Pituitary World News

Ben Munoz

Arteriovenous Malformation

Brittany Cocilova


Carri Levy


Ilana Jacqueline

Primary Immune Deficiency Disease

Marilyn Schanbeck


Teri Koerner

Snyder-Robinson Syndrome

Laurie Sterner

The Butterfly Fund

Robb Freed

Epidermolysis Bullosa

Jennifer Champy


Daphne Adelman


Mike Schmidt

Osteogenic Sarcoma

Julia Alton

Fabry Disease


Cara O’Neill

Sanfilippo Syndrome (MPS III)

Paul Martinez

Epidermolysis Bullosa (EB)

Melissa Hogan