Albireo Recognizes Rare Disease Day and Supports Global Effort to “Reframe Rare” By Highlighting the Challenges of Choles...
February 27 2020 - 8:00AM
Albireo Pharma, Inc. (ALBO), a clinical-stage orphan pediatric
liver disease company developing novel bile acid modulators, today
announced its support for Rare Disease Day 2020 and reaffirms its
commitment to patients and families living with biliary atresia
(BA), Alagille syndrome, progressive familial intrahepatic
cholestasis (PFIC) and other rare cholestatic diseases.
Rare Disease Day (www.rarediseaseday.org) was established by
EURORDIS in 2008 and takes place on the last day of February each
year to raise global awareness of the risk and impact of rare
diseases. The global theme for Rare Disease Day 2020 is “Reframe
Rare,” highlighting the need to address many of the misconceptions
about rare diseases. Throughout February, Albireo has presented
insights and shareable content from families affected by rare
cholestatic liver diseases on the company’s social media
platforms.
“Rare Disease Day is an important opportunity to shed light on
the extreme physical, social and psychological burdens that people
affected by rare diseases face, and to join with patients, families
and healthcare professionals around the world in building awareness
and understanding,” said Ron Cooper, President and Chief Executive
Officer of Albireo. “We applaud the effort to reframe discussions
about rare diseases to improve our ability to support patients and
advance research to find new treatments.”
Albireo employees will also participate in Rare Disease Day 2020
activities to show their support for all patients and families
affected by cholestatic liver diseases. The company will host
meetings in their Sweden and Boston offices with families living
with BA and primary sclerosing cholangitis (PSC). Both BA and PSC
are rare progressive disorders characterized by bile accumulation
due to damaged bile ducts. Albireo team members around the world
will share their support for patients with cholestatic liver
diseases on social media and the company will participate in the
MassBIO Rare Disease Day breakfast recognizing important advances
in research in rare diseases.
“We hope that everyone will take an opportunity to help family,
friends, healthcare providers and others to learn more about the
impact of rare diseases by sharing their experience on social
media,” said Roberta Smith, President of Alagille Syndrome Alliance
(ALGSA, www.alagille.org). “Together we can help more people
understand the unique challenges that Alagille syndrome and other
rare cholestatic liver diseases can present and we can work to
provide better support and advance research that could lead to a
cure.”
“Feeling isolated is a common experience in the rare disease
community, especially when you are dealing with rare liver
disease,” said Emily Ventura, President and Co-Founder of PFIC
Network (www.pfic.org). “It’s essential for people to realize there
is strength in joining and sharing both common and unique PFIC
experiences with other rare disease communities. This can
definitely benefit the greater good.”
For information and about progressive familial intrahepatic
cholestasis (PFIC), visit PFIC.org; Alagille syndrome, visit
Alagille.org; biliary atresia, visit childliverdisease.org; and
primary sclerosing cholangitis (PSC) visit pscpartners.org.
About Albireo Albireo Pharma is a
clinical-stage biopharmaceutical company focused on the development
of novel bile acid modulators to treat orphan pediatric liver
diseases, and other liver and gastrointestinal diseases and
disorders. Albireo’s lead product candidate, odevixibat, is being
developed to treat rare pediatric cholestatic liver diseases and is
in Phase 3 development in its initial target indication,
progressive familial intrahepatic cholestasis. Albireo’s clinical
pipeline also includes two Phase 2 product candidates. Albireo’s
elobixibat, approved in Japan for the treatment of
chronic constipation, is the first ileal bile acid transporter
(IBAT) inhibitor approved anywhere in the world.
To hear perspectives from families affected by PFIC, visit
www.pficvoices.com.
Albireo was spun out from AstraZeneca in
2008. Albireo Pharma is based in Boston, Mass., and
its key operating subsidiary is in Gothenburg, Sweden.
The Boston Business Journal named Albireo one of the 2019
Best Places to Work in Massachusetts. For more information on
Albireo, please visit www.albireopharma.com.
Media Contact: Lynn Granito, Berry & Company
Public Relations, (212)
253-8881, lgranito@berrypr.com
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