Albireo Spotlights Global Patient Communities on Rare Disease Day
February 26, 2021 at 08:30 AM EST
– Calls to unite global communities affected by rare diseases –
– Albireo supports increasing education and advances in research for rare cholestatic liver diseases –
BOSTON, Feb. 26, 2021 (GLOBE NEWSWIRE) -- Albireo Pharma, Inc. (Nasdaq: ALBO), a clinical-stage rare liver disease company developing novel bile acid modulators, joins the rare disease community in support of Rare Disease Day 2021. Established by EURORDIS, Rare Disease Day www.rarediseaseday.org aims to build broader awareness of the unique needs and challenges of patients and families affected by rare diseases. This year’s theme of Stay Connected focuses on helping rare disease communities around the world share information and support online with the first fully digital and interactive events planned by organizations in patient advocacy, research and patient care around the world.
“Within the general population, very little is known about rare childhood liver conditions. On Rare Disease Day, the voices, experiences, struggles and milestones of these communities take center stage,” said Alison Taylor, Chief Executive of Children’s Liver Disease Foundation (CLDF). “This is a day to share stories and educate professionals, families and young people, and this platform brings rare disease groups together in an otherwise very isolating environment.”
Through greater connectivity with the patient community, Albireo will further the mission to advance life-changing research that can lead to new treatment options and better care, all informed by the patient voice. Albireo will be spotlighting rare patient communities and the critical needs of patients, caregivers and the medical community around the world. To Stay Connected, the Company is launching a new @PFICvoices Instagram page to connect patients and families who are managing progressive familial intrahepatic cholestasis (PFIC), a rare, life-threatening disease. Members of the global PFIC community can share personal stories and experiences. Patient and caregiver stories will also be featured on the PFIC Voices Facebook page and Albireo Twitter and LinkedIn channels, and supportive educational resources in seven languages can be found at pficvoices.com/resources/.
“The experiences of advocates, patients and families inspire and guide us in our work to advance research targeting new treatments for cholestatic liver diseases, including PFIC, Alagille syndrome, biliary atresia and PSC,” said Ron Cooper, President and Chief Executive Officer of Albireo. “Staying connected with the patient community and their stories impacts everything we do, from our patient education resources to our clinical trials, with the ultimate goal of potentially reducing the burden of rare cholestatic liver diseases.”
For information on patient advocacy organization and disease education, check out these great resources: CLDF at childliverdisease.org; the PFIC Advocacy and Resource Network at PFIC.org; Alagille Syndrome Alliance at Alagille.org; and PSC Partners and Seeking a Cure at pscpartners.org.
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