EB Research Partnership's Historic Bell Ringing at NYSE: A Global Call to Action for Epidermolysis Bullosa

A Historic Moment for Epidermolysis Bullosa

In a remarkable event that highlights a decade's worth of progress in treating Epidermolysis Bullosa (EB), the EB Research Partnership (EBRP) rang the Opening Bell at the New York Stock Exchange on August 20, 2025. This event not only celebrated the advancements made in combatting this rare, life-threatening skin disorder but also served as a rallying call for awareness and further research.

The Significance of the Event

Michael Hund, the CEO of EBRP, expressed profound gratitude for the recognition, stating, “The bell ringing is more than a ceremony, it's a call to action.” This statement encapsulates the organization's dual role as a celebration of achievements and an urgent plea for continuous support in the quest for a cure for EB.

Founded in 2010 by a group of passionate parents and supported by renowned personalities like Jill and Eddie Vedder of Pearl Jam, EBRP has grown to become the largest global nonprofit focused solely on funding research to overcome this debilitating condition. The organization has significantly raised awareness and funding—over $70 million to date—with more than 160 research projects initiated and a 25-fold increase in the number of clinical trials.

A Model of Innovative Philanthropy

The Venture Philanthropy model that EBRP employs is pivotal in transforming donations into sustainable funding streams. Instead of merely distributing funds without benefit, EBRP retains potential financial returns when therapies become commercially viable. This innovative approach allows the organization to continually reinvest in research and development, making contributions significantly more impactful.

Marie DiPalma, whose son has lived with EB, shared her sentiments on the importance of progress in awareness, stating, “Ringing the bell is more than just symbolic; it’s an invitation for the world to unite with us, to help us drive research forward.” Her words emphasize that the fight against EB relies heavily on community involvement and awareness, as well as adequate funding.

Celebrating Achievements and Future Endeavors

As part of this momentous occasion, EBRP highlighted several recent achievements in the EB landscape, including the FDA approval of three treatments in the past two years. These milestones represent beacons of hope for the estimated 500,000 individuals affected by EB worldwide.

In addition, the praised documentary, Matter of Time, which follows Eddie Vedder's concerts while showcasing profound patient and researcher stories, made its debut at the 2025 Tribeca Film Festival. This film aims to bolster awareness regarding EB while driving attention to the ongoing efforts of EBRP. The documentary is set for a theatrical release, providing an excellent platform for advocacy on a larger scale.

A Community United for Change

With over 400 million people globally affected by rare diseases, EBRP stands as a symbol of what can be achieved through united efforts. The ceremony at the NYSE was not merely a celebration but a powerful statement on the importance of research in combating rare diseases like EB.

As EBRP moves forward, they aim to not only find a cure for Epidermolysis Bullosa but also to provide a framework for addressing many other rare diseases systematically.

In conclusion, the ringing of the Opening Bell at the New York Stock Exchange signifies not only past achievements but also the urgent path ahead in the fight against EB and other rare diseases. Together, through commitment, awareness, and support, there's potential for groundbreaking advancements in medicine and treatment for all affected.

About EB Research Partnership

Founded in 2010, EBRP is dedicated to accelerating research to find cures for Epidermolysis Bullosa and fostering solutions for other rare diseases. Their innovative approach to philanthropy is setting new standards in the nonprofit sector and driving impactful change across the board. To learn more, visit EB Research Partnership.