Our Ambition

We believe patients are the roots of change. We seek to empower rare disease patients and caregivers while raising awareness of their needs among key decision-makers in healthcare, pharmaceuticals, medical research, and government.

Our Vision

A world where rare disease patients and caregivers can access the understanding, support, and resources they need to live better lives.

Our Goals

By the end of 2027, we will:

• Reach 5,000+ stakeholders with our rare disease awareness efforts
• Support 1,000+ patients, caregivers, and healthcare providers through advocacy and education.
• Build 8+ partnerships or public-facing collaborations to influence policymakers and industry leaders.

Partner with us to use insights from our studies to help save, extend, and improve the quality of life for patients and their caregivers.

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Board of Directors

Rare Disease Advocacy board members provide their time and expertise on a pro bono basis. They receive no compensation for any costs or expenses they incur in relation to their role. Board meetings are held quarterly.

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Advisors

Advisors to Rare Disease Advocacy include experienced healthcare professionals, patient advocates, and customer insight experts. They have generously provided their expertise to guide the development of the organization.

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