Chiesi Global Rare Diseases Spotlights the Profound Impact of Epidermolysis Bullosa in the Film “Living Between Pain and Hope” as part of “The Next Frontier,” a New Series Presented by the Biotechnology Innovation Organization
BOSTON, July 28, 2025 (GLOBE NEWSWIRE) -- Chiesi Global Rare Diseases (Chiesi) proudly shares its contribution to the thought-provoking film "Living Between Pain and Hope," as part of “The Next Frontier,” a series presented by the Biotechnology Innovation Organization (BIO) and produced by BBC StoryWorks Commercial Productions.
In the second half of a pivotal decade for the planet, biotechnology holds the key to addressing a wide range of pressing issues, from healthcare challenges to unlocking nature's wisdom and creating resilient infrastructures to support daily life.
Through 13 compelling, human-led films spanning continents and industries, “The Next Frontier” brings the invisible into focus, translating complex science into powerful storytelling. The series shines a light on innovators, researchers, entrepreneurs, and communities who are working at the edge of science and purpose. From labs and clinics to fields and factories, the series uncovers the personal journeys of the scientists and innovators driving change, using cinematic storytelling to bring their work to life.
The film, “Living Between Pain and Hope”, features the moving and inspiring experiences of Abrar and Michael, both living with epidermolysis bullosa (EB), a rare and devastating group of hereditary skin disorders. Abrar is a 30-year-old author and social media influencer from Jeddah, Saudi Arabia, and Michael is a 31-year-old social media content creator and Life Coach from Udine, Italy. This is not just a film, it is a window into resilience, pain, and hope and allows broader audiences, from policymakers to the public, to see the person, not just the diagnosis.
“Our commitment to the rare disease community is unwavering, and a core element of this is actively amplifying the voices of those living with a rare disease. We recognize that these individuals possess unique and powerful insights that are essential to understanding and addressing the challenges they face.” said Stuart Siedman, VP Global Patient Advocacy, Chiesi Global Rare Diseases. “Building on our existing work in patient community storytelling through the 'It's Rare for Me' project, this expanded effort reflects our deep appreciation for the willingness of patients to share their experiences. By prioritizing their perspectives, we aim to foster greater understanding, inspire action, and ultimately accelerate the development of solutions that truly meet the needs of this community.”
For too long, the voices of people living with rare diseases have been missing from critical conversations. Chiesi is committed to changing that by empowering patients to share their stories in their own words. Storytelling can foster awareness, influence policy, accelerate diagnosis, and shape access to treatment. Chiesi has witnessed firsthand how patient stories increase engagement among advocacy groups, healthcare professionals, and policymakers.
As an active part of the rare disease community, patient engagement is central to the company’s mission. Storytelling is how this commitment is demonstrated, creating space for unheard voices to drive meaningful change. Stories should do more than just raise awareness; they should inspire action, influencing everything from clinical trial design and regulatory decisions to internal innovation. This dedication extends within the Chiesi organization, where every major meeting begins with a patient's story, grounding its work and fostering a culture of care, urgency, and proximity to the community.
“Revolutionary thinking from biotechnology’s scientists, innovators, and leaders is needed to solve society’s modern-day challenges,” said John F. Crowley, President & CEO of BIO. “This amazing series not only highlights biotech stories, it also instills in viewers one of the most powerful human emotions: hope. Hope first allows us to believe and then to act, helping to power the biotechnology revolution as it reimagines the potential and possibilities for people and communities everywhere.”
The 6-minute film debuted at the BIO International Convention, Boston, MA. The screening was followed by a panel, “The Next Frontier: How Stories Can Unlock the Power of Biotech,” featuring Lucia Contofalska, PharmD, Patient Advocacy Manager, Chiesi Global Rare Diseases, among other leaders with diverse expertise across biotechnology and filmmaking, discussing the power of storytelling. Additional details on the panel can be found here.
About The Next Frontier
From pandemic preparedness to food security, climate change to resource scarcity, the world requires innovative solutions to the challenges facing society. With its potential to create a diverse and global impact, biotechnology is one tool for humanity’s response. The Next Frontier explores how biotechnology can be used effectively to address the urgent challenges the world faces. The series highlights biotechnology’s potential to create a healthier and more sustainable future for all. The Next Frontier is BIO’s third original film series produced by BBC StoryWorks Commercial Productions. Explore the series here.
About Epidermolysis Bullosa
Epidermolysis Bullosa (EB) is a rare and devastating group of hereditary disorders of the skin, mucous membranes, and internal epithelial linings characterized by extreme skin fragility and blister development. Patients with severe forms of EB suffer from severe, chronic blistering, ulceration, and scarring of the skin, mutilating scarring of the hands and feet, joint contractures, strictures of the esophagus and mucous membranes, a high risk of developing aggressive squamous cell carcinomas, infections, and risk of premature death.
About Chiesi Group
Chiesi is a research-oriented international biopharmaceutical group that develops and markets innovative therapeutic solutions in respiratory health, rare diseases, and specialty care. The company’s mission is to improve people’s quality of life and act responsibly towards both the community and the environment.
By changing its legal status to a Benefit Corporation in Italy, the US, France and Colombia, Chiesi’s commitment to creating shared value for society as a whole is legally binding and central to company-wide decision-making. As a certified B Corp since 2019, Chiesi is part of a global community of businesses that meet high standards of social and environmental impact. The company aims to reach Net-Zero greenhouse gases (GHG) emissions by 2035.
With 90 years of experience, Chiesi is headquartered in Parma (Italy), with 31 affiliates worldwide, and counts more than 7,500 employees. The Group’s research and development centre in Parma works alongside 6 other important R&D hubs in France, the US, Canada, China, the UK, and Sweden.
For more information visit: www.chiesi.com
About Chiesi Global Rare Diseases
Chiesi Global Rare Diseases is a business unit of the Chiesi Group established to deliver innovative therapies and solutions for people living with rare diseases. As a family business, Chiesi Group strives to create a world where it is common to have a therapy for all diseases and acts as a force for good, for society and the planet. The goal of the Global Rare Diseases unit is to ensure equal access so as many people as possible can experience their most fulfilling life. The unit collaborates with the rare disease community around the globe to bring voice to underserved people in the health care system.
For more information visit: www.chiesirarediseases.com.
Follow @ChiesiGlobalRareDiseases on LinkedIn, Facebook, Instagram, X and YouTube.
Chiesi Global Rare Diseases Media Contact Sky Striar
LifeSci Communications
sstriar@lifescicomms.com
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