The rare disease
education gap affects

The only specialty-specific platform for rare disease information and education
Personal Mission and Professional Expertise
Founder & Parent of a Child with a Rare Disease
Jack has been doing biopharma marketing for more than four decades. The past 8 years in rare diseases. Like many individuals in the rare disease world, he also has deep personal experience with rare diseases.
Founder & Parent of a Child with a Rare Disease
Jeff is an industry veteran with more than 20 years of healthcare communications experience. Much of his career has been spent working with biopharma on very specialized products. As a father of a very special boy with a rare disorder Jeff is passionate about finding more effective ways to educate and empower patients so they may advocate for their own care.