Advocating for all people with rare disease
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, sexual orientation, gender identity/expression, 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.
No single organization can solve this health inequity crisis alone. That’s why we’re proud to work closely with the Black Women’s Health Imperative (BWHI) to spearhead the formation of the Rare Disease Diversity Coalition (RDDC). Led by BWHI, the coalition exists to address the pressing challenges faced by marginalized populations and identify potential solutions. The coalition comprises a diverse group of healthcare organizations, patient advocacy groups, and industry experts who share a passion and a commitment to addressing the racial and socioeconomic disparities among people living with rare disease.
In February 2021, the coalition officially launched with its first public meeting. More than 200 rare disease community members came together to endorse an ambitious platform of 11 initiatives that had been researched and developed in working groups since the previous spring. These initiatives set out to achieve tangible solutions to address the delays in diagnosis and treatment for diverse patients, and the historic and cultural barriers to medical care and research. RDDC calls for legislative and administrative solutions to reduce disparities. Learn more about the Rare Disease Diversity Coalition’s action plan. View the February 2021 RDDC public meeting.
We are committed to supporting the initiatives that can make a real difference. Our priority is to recommend concrete actions that will be delivered to the decision makers with the power to change the rare disease healthcare system. We believe in a better future for all people with rare diseases, where every patient is treated fairly and equally, and we’re playing a part in building that world.
We are committed to creating a multigenerational, multiracial, and multibackground workforce that celebrates diversity in all forms, including but not limited to race, age, ethnicity, gender, sexual orientation, gender identity/expression, religious affiliation, disability and socioeconomic status. Together, we’ve built a culture that embraces each team member’s unique experiences, backgrounds and talents empowering them to reach their highest potential.
At Travere Therapeutics we foster a culture that embeds inclusivity in every part of the organization. We work to identify and implement activities aimed at supporting our diversity goals across numerous areas, including: