EB Research Partnership Rings The Opening Bell® at The New York Stock Exchange to Shine Global Spotlight on Epidermolysis Bullosa

Historic moment underscores a decade of progress and the organization's urgent mission to cure Epidermolysis Bullosa and pioneer a path for the 400 million people affected by rare diseases worldwide.

NEW YORK, Aug. 20, 2025 /PRNewswire/ -- In a milestone moment underscoring the growing momentum in the fight against Epidermolysis Bullosa (EB), yesterday EB Research Partnership (EBRP) proudly rang The New York Stock Exchange Opening Bell®. Families living with EB and fierce EB advocates joined EBRP for the ceremony to celebrate the organization's groundbreaking progress and its growing impact on the rare disease community worldwide.

HONORING MILESTONES AND A RENEWED CALL TO ACTION

"We are deeply honored by this recognition. The bell ringing is more than a ceremony, it's a call to action," said Michael Hund, CEO of EB Research Partnership. "We celebrate the incredible strides we've made, but we know the work is far from over. Standing here is proof of the growing momentum to cure EB, and a reminder that together, we can make rare disease history."

Founded in 2010 by a group of dedicated parents along with Jill and Eddie Vedder of Pearl Jam, EBRP has become the largest global nonprofit solely dedicated to accelerating research to find a cure for EB, a group of rare and life-threatening skin disorders that affect children from birth. Over the last decade, EBRP has made undeniable progress towards this mission, including:

• Raising over $70M
• Funding 160+ EB research projects
• Contributing to a 25x growth in the EB clinical trial landscape
• Directly funding two FDA-approved EB treatments via their award-winning Venture Philanthropy model

"When your child has EB, you quickly learn that progress depends on awareness, funding, and relentless advocacy," said Marie DiPalma, whose son Thomas lives with EB. "Ringing the bell isn't just symbolic, it's an invitation for the world to stand with us, help us drive research forward, and together we can change the future for the EB community."

ACCELERATING RESEARCH, DRIVING IMPACT

EBRP's Venture Philanthropy model leverages concepts from principal investing and applies them towards achieving philanthropic goals. When making a grant to a research project, EBRP retains the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then uses the return on investment to fund additional EB research until a cure is found. Historically, non-profits have passed on these financial benefits. Instead, EBRP participates in them, giving every donation the potential to grow to multiples of its original value and making philanthropy sustainable. EBRP's Venture Philanthropy model has been highlighted for its leadership by Harvard Business School, Yale University, Forbes, and MIT in helping to transform the EB landscape while creating scalable impact for the 400M+ globally impacted by a rare disease.

To date, EBRP has executed over 120 Venture Philanthropy deals, helping to contribute to a landscape transformation of more than 50 clinical trials and 3 FDA approved treatments. These treatments are not only changing lives in the EB community today; they are powerful proof points demonstrating how EBRP's model can serve as a blueprint for breakthroughs across the rare disease space.

A GLOBAL SPOTLIGHT ON EB

The ceremonial bell ringing comes on the heels of historic milestones, as the EB community celebrates receiving three FDA-approved treatments in the past two years alone. It also follows the global premiere of Matter of Time this past June, a powerful documentary that weaves together Eddie Vedder's 2023 solo concerts in Seattle with the moving stories of the patients, families, researchers, and thought leaders working tirelessly to achieve a cure.

Following a history-making debut as an Official Selection of the 2025 Tribeca Film Festival, Matter of Time will soon embark on a theatrical release that will bring the film to major cities across the United States and around the world. This next chapter in the documentary's journey will serve as a beacon of hope for the 500,000 individuals affected by EB and as a catalyst for global action as EBRP shows the world how rare diseases can be cured.

About EB Research Partnership

Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research to accelerate treatments and find a cure for Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.

While EB is a rare disease, there are 10,000 rare diseases that affect 1 in 10 people in the world, 95% of which have no treatments, that can benefit from the research that EBRP funds and their innovative Venture Philanthropy model.

To learn more about EBRP, visit www.ebresearch.org

For more information on Matter of Time, visit www.ebresearch.org/matter-of-time-film

SOURCE EB Research Partnership