“The drive to develop better treatment options for rare disease patients is personal for us at Travere because the lives of many of our own team members have been in some way touched by rare disease,” said
Consistent with values of being patient-inspired and promoting community, the Company has supported important initiatives occurring this month amongst organizations such as, Everylife Foundation for Rare Diseases, the
National Burden of Rare Disease Study
Understanding the true economic cost of living with a rare disease is critical. The National Burden of Rare Disease Study conducted by the EveryLife Foundation for Rare Diseases will be the first-ever to quantify both the direct and indirect costs that families face living with rare disease, and aims to increase awareness of the public health crisis of rare disease and inform policy proposals. Results from this important study are expected on
Rare Disease Diversity Coalition
The challenges of living with a rare disease do not always fall equally on people. Travere Therapeutics has worked closely with the leaders of the Black Women’s Heath Imperative (BWHI) to spearhead the formation of the
The nonprofit organization RARE-X is building a global patient-powered data platform that will enable patient communities to share data in a secure and structured way to assist researchers, drug developers and clinicians in accelerating diagnoses, increasing disease understanding, and developing treatments. The organization is dedicated to removing access barriers to the technology and to reaching racially, socioeconomically and geographically diverse patient communities to ensure that advances in rare disease care can reach all patients. This week RARE-X announced enhancements to data sharing on their platform to better support the development of future treatments. Read more about the work of RARE-X.
“This important work led by these admirable organizations is collectively helping to increase the body of knowledge available in the rare community and leading the way forward for future innovation,” said
Rare Disease Day, which is held on the last day of February every year, seeks to build public awareness about rare diseases and their impact on people's lives. It is led in the US by NORD and internationally by EURORDIS. For information on Rare Disease Day participation, visit rarediseaseday.us or rarediseaseday.org.
About Travere Therapeutics
At Travere Therapeutics we are in rare for life. We are a biopharmaceutical company that comes together every day to help patients, families and caregivers of all backgrounds as they navigate life with a rare disease. On this path, we know the need for treatment options is urgent – that is why our global team works with the rare disease community to identify, develop and deliver life-changing therapies. In pursuit of this mission, we continuously seek to understand the diverse perspectives of rare patients and to courageously forge new paths to make a difference in their lives and provide hope – today and tomorrow. For more information, visit travere.com.
Established in 1983, the
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 rare disease patient organisations from 70+ countries that work together to improve the lives of the 30 million people living with a rare disease in
About Rare Disease Diversity Coalition
The Black Women's Health Imperative launched the
About EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives. For more information about EveryLife Foundation for Rare Disease, visit everylifefoundation.org.
RARE-X is a 501(c)(3) patient advocacy organization focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology. RARE-X’s goal is to build the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.
1Global Genes website. https://globalgenes.org/world-rare-disease-day/#. Last accessed February 16, 2021.
Chris Cline, CFA
Senior Vice President, Investor Relations & Corporate Communications
Source: Travere Therapeutics, Inc.