Rare Disease Difference Maker™

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.

Farber Disease

Gaucher’s Disease

Little Miss Hannah Foundation

Metachromatic Leukodystrophy (MLD),

Chloe’s Fight

Uplifting Athletes

Acromegaly, Pituitary World News

Arteriovenous Malformation

BrandStar

BrandStar

Primary Immune Deficiency Disease

Undiagnosed

Snyder-Robinson Syndrome

The Butterfly Fund

Epidermolysis Bullosa

Tracheobronchomalacia

Acromegaly

Osteogenic Sarcoma

Fabry Disease

Sanfilippo Syndrome (MPS III)

Cystinosis

Epidermolysis Bullosa (EB)

MPS II