We embrace equity, diversity and inclusion.
Within our advocacy commitment, we support organizations striving to address health disparities among rare disease patients of all backgrounds including those who face the highest hurdles because of their race, ethnicity, gender, age or socioeconomic status.
For groups such as communities of color, people living in poverty and geographically disparate populations, there are often significant barriers to obtaining a diagnosis and adequate treatment, even for common health conditions. These delays in diagnosis – which lead to delays in treatment – can result in serious disease progression.
Social determinants, such as access to health insurance, transportation for appointments, nutritious foods, clean air and water, level of education, and social and physical environment all impact health outcomes. These social determinants are often linked to socioeconomic status and race.
In addition, these challenges are often compounded by healthcare provider bias. Patients of color face longer wait times to see a doctor, are less often referred to specialists, and are far less likely to be provided information about clinical trials for potential new therapies. Patients without financial means may also lack basic necessities such as childcare, safe housing and time off from work (paid or otherwise) to see a doctor.