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Our Impact in Rare

Health Equity in Rare

Living with a rare disease is inherently inequitable. More than 400 million people around the world are living with a rare disease; that is more than those living with cancer and AIDS combined.

Pioneering Rare Disease Ecosystems

Our reach and purpose expand beyond delivering potentially life-changing treatments; we are catalysts for creating and advancing rare disease ecosystems around the world, many in countries where there is no current plan for rare disease care.

Progressing Health Equity

On average it takes around five years to receive a diagnosis, involving over seven specialists  and several misdiagnoses. Even when a diagnosis is received, less than 10% of known rare diseases have an approved treatment. Eighty percent of the conditions are genetic and one in two patients diagnosed is a child.


We're committed to taking bold steps to help create more equitable care for people living with rare diseases.

Our Bold Steps to Address Rare Disease Inequity

Reducing the Time to Diagnosis

We are collaborating with partners across the healthcare ecosystem to reduce the time to diagnosis and improve access to treatment. Access to effective screening and diagnostic tools remain inequitable for many patients with rare conditions. We’re working to expand access to newborn screenings and next generation sequencing, two key ways to provide needed answers more rapidly. We’re also developing and testing digital health technologies to make it easier to reach undiagnosed patients in underserved geographic locations.

Our Commitment

Accelerating Diagnosis, Treatment and Access

We are focused on speeding time to diagnosis and expanding access to treatments across the globe. Even the best solutions are not effective if they cannot reach the people who need them. We are focusing on developing and delivering new treatments and serving the rare disease community in more parts of the world. With digital technology expertise and support, we can overcome barriers and improve their treatment options.

Advancing Health Equity Imperatives

Addressing health equity challenges will require policymakers and health care stakeholders to consider the unique circumstances inherent to rare disease drug development, reimbursement and diagnosis, among other issues, and craft sound policy solutions. Such solutions also should encourage and facilitate patient access to treatments and be supported by a health care infrastructure that encourages appropriate data collection and medical research, the use of real-world evidence and collaboration across communities.

Veeva ID: GL/ALL/0038