Travere Therapeutics, Inc. (NASDAQ: TVTX) will join
the National Organization for Rare Disorders (NORD),
the European Organisation for Rare
Diseases (EURORDIS), EveryLife Foundation for Rare
Diseases, Global Genes, and rare disease advocates and patients
worldwide in recognizing February 28 as Rare Disease Day 2021.
Rare Disease Day honors the more than 400 million people around the
world living with a rare disease, along with their families,
caregivers and advocates.1
“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 Eric Dube, Ph.D., chief
executive officer of Travere Therapeutics. “Rare Disease Day is an
important reminder that we are stronger together in our pursuit to
improve access to diagnosis, treatment and care for the rare
community.”
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 Rare
Disease Diversity Coalition and RARE-X. These organizations are
dedicated to finding solutions to healthcare inequity and to
continued innovation in rare disease.
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 February 25th. Read more about the National
Burden of Rare Disease Study.
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 Rare Disease Diversity Coalition. In the spring of
2020, BWHI brought together a steering committee of influential,
cross-sector leaders who share a passion and a commitment to
addressing the racial and socioeconomic disparities among people
living with a rare disease. After 10 months of working group
meetings, on February 23, the coalition officially launched with
more than 200 rare disease diversity health leaders and
community members who joined together to endorse an ambitious
platform of 11 initiatives to achieve tangible solutions to
address issues including delays in diagnosis and treatment for
diverse patients. Read more about the initiatives of the Rare
Disease Diversity Coalition.
RARE-X
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 Dr. Dube
Travere Therapeutics will celebrate Rare Disease
Day on February 26, with a program for its workforce featuring
keynote speaker Linda Goler Blount, president of the Black Women’s
Health Imperative and chair of the Rare Disease Diversity
Coalition, and a panel of people sharing their experiences living
with rare kidney, liver and metabolic disorders.
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.
About NORD
Established in 1983, the National
Organization for Rare Disorders (NORD) is a unique federation of
voluntary health organizations dedicated to helping people with
rare "orphan" diseases and assisting the organizations that serve
them. A nonprofit organization, NORD represents the 30 million
Americans with rare diseases and is committed to the
identification, treatment and cure of rare disorders through
patient assistance, education, advocacy, research and
patient/family services. For more information about NORD, visit
rarediseases.org.
About EURORDIS
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 Europe. Rare
Disease Day was launched by EURORDIS and its Council of National
Alliances in 2008 and brings together millions of people in
solidarity. EURORDIS coordinates the global community in organising
Rare Disease Day, which takes place on the last day of
February each year to raise awareness of the impact that rare
diseases have on people around the world. For more information
about EURORDIS, visit eurordis.org.
About Rare Disease Diversity
Coalition
The Black Women's Health Imperative
launched the Rare Disease Diversity Coalition to address the
extraordinary challenges faced by rare disease patients of color.
The Coalition brings together rare disease, patient advocacy,
medical and health diversity experts, and industry leaders to
identify and advocate for evidenced-based solutions to alleviate
the disproportionate burden of rare diseases on communities of
color, and help achieve greater equality within the rare disease
community.
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.
About RARE-X
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.
Contact:Chris Cline, CFASenior Vice President,
Investor Relations &
Corporate Communications888-969-7879IR@travere.com
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