The Remarkable Life of Ibelin to Receive EURORDIS Black Pearl Media and Awareness Raising Award
Award-winning documentary honored for global reach and representation of rare disease, disability, and digital life
Newport Beach, CA – January 20, 2026 — The internationally acclaimed documentary The Remarkable Life of Ibelin will receive the Media & Awareness Raising Award at the EURORDIS Black Pearl Awards on February 24, 2026, in Brussels and online. The award recognizes the film’s extraordinary role in elevating global understanding of rare diseases, especially Duchenne muscular dystrophy, through the power of storytelling.
Directed by Benjamin Ree and produced by Ingvil Giske, the Norwegian documentary follows the life of Mats Steen, a young man with Duchenne who sadly lost his battle with the disease at the young age of 25. Though his physical world was limited by the progressive, muscle-wasting disease, Mats built deep friendships and left a profound impact through his adventures in World of Warcraft. After his passing, Mats’ parents, Robert and Trude Steen, discovered that their son had formed deep bonds with people across the globe. The film, now available on Netflix worldwide, weaves together blog entries, home videos, and immersive animated sequences to reveal how virtual spaces can be gateways to genuine human connection.
Premiering at the Sundance Film Festival in 2024, where it received both the Audience Award and the Directing Award, the film has gone on to earn 14 awards, 31 nominations, and critical acclaim on Netflix. Robert and Trude Steen will accept the award in Brussels, in honor of their son’s life and the legacy his story continues to build.
“We are deeply grateful to Trude and Robert Steen for their courage in sharing Mats’ story with the world,” said Debra Miller, founder and CEO of CureDuchenne. “Through The Remarkable Life of Ibelin, Mats’ legacy extends far beyond his own life, giving voice to not just those with Duchenne, but to the more than 300 million people around the world living with a rare disease. I look forward to attending the EURORDIS Black Pearl Awards to help honor this powerful film that continues to move people, raise awareness, and inspire progress toward a cure for the disease that took Mats far too soon.”
The documentary’s impact has extended far beyond the screen. Inspired by Mats’ story, Blizzard Entertainment ® launched a charity campaign with the massively multiplayer online role-playing game, World of Warcraft® that raised over $2 million for CureDuchenne to drive innovative, early-stage research aimed at curing Duchenne muscular dystrophy. As a global leader in Duchenne research and care, CureDuchenne has invested more than $27 million in research, including funding the first FDA-approved treatment for Duchenne, helped bring 18 programs into human clinical trials, and catalyzed more than $3 billion in follow-on investment from the biotech and pharmaceutical sectors. CureDuchenne’s international efforts also include training healthcare professionals and supporting families in more than a dozen countries, expanding access to bilingual clinical care, and providing family-focused resources that improve lives.
“By capturing the life and legacy of one remarkable young man, The Remarkable Life of Ibelin has not only elevated global empathy for people living with rare diseases, it has transformed how the world sees them,” said Virginie Hivert, Acting CEO of EURORDIS-Rare Diseases Europe. “This film is a powerful reminder that storytelling can be one of the most effective tools we have to drive awareness, foster understanding, and inspire meaningful change.”
The EURORDIS Black Pearl Awards will take place on February 24, 2026, at the Cardo Hotel in Brussels and will also be broadcast online for free as part of a global hybrid event. To watch the ceremony and celebrate the individuals and stories driving progress in rare diseases, register to attend virtually at blackpearl.eurordis.org.
About CureDuchenne
Over twenty years ago, CureDuchenne was created with one goal: to find and fund a cure for Duchenne muscular dystrophy, one of the most common and severe forms of muscular dystrophy. Today, CureDuchenne is recognized as a global leader in research, patient care, and innovation for improving and extending the lives of those with Duchenne. CureDuchenne’s innovative venture philanthropy model has advanced transformative treatments for Duchenne muscular dystrophy, including 19 projects that advanced to human clinical trials and multiple projects to overcome the limitations of exon-skipping and gene therapy. In addition, CureDuchenne contributed early funding to the first FDA-approved Duchenne drug, pioneered the first and only Duchenne physical and occupational therapist certification program and created an innovative data-integrated biobank, accelerating research toward a cure. For more information on how to help raise awareness and funds needed for research, please visit cureduchenne.org or follow us on Facebook, Instagram, LinkedIn,and X.
About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 76 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
