The rare disease community is among the most marginalised patient communities. Reducing the time to diagnosis and improving access to care and treatment is one of our top priorities.
On average, it takes approximately five years to receive an accurate rare disease diagnosis, a path that includes multiple doctors, specialists and misdiagnoses. Limited awareness of rare diseases and a lack of treatment options often compound the challenges for people living with rare diseases.
We're committed to taking bold steps to help create more equitable care for people living with rare diseases.
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.
People living in rural and underserved areas often face barriers to care due to lack of medical clinics, reliable internet access, and limited transportation options. With digital technology expertise and support, we can overcome barriers and improve their treatment options.
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