Community and Collaboration

Building lasting relationships with the communities we serve is a foundational element of our corporate mission

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We have an ongoing and ever-expanding commitment to our community, including the following activities:

  • Facilitate improved and earlier patient identification
  • Increase access to resources such as genetic testing and counseling
  • Amplify the voices of community members
  • Partner with advocacy groups on fundraising efforts and initiatives

Passage Bio in the community

A proud member of…

Life Sciences Pennsylvania, a statewide trade association representing the entire life sciences industry. Together, we’re helping to unify Pennsylvania’s innovators to make the Commonwealth a global life sciences leader.

Learn more at lifesciencespa.org.

Life Science Cares Philadelphia, uniting the greater Philadelphia life science community in the fight against poverty.

Learn more at lscphilly.org.

BioNJ has a mission to enhance the climate for life sciences in the state and realize the potential the industry has to change the course of human health.

Learn more at bionj.org.

The Biotechnology Innovation Organization (BIO) is the world’s largest advocacy association and a proactive voice focused on driving a revolution to cure patients, protect our climate, and nourish humanity.

Learn more at bio.org.

The Alliance for Regenerative Medicine is working to realize the promise of regenerative medicines and advanced therapies, serving as the global voice of the sector.

Learn more at alliancerm.org.

Delaware Bio has a mission to be a catalyst for bioscience innovation in Delaware, with the goal of expanding the state’s vibrant science economy.

Learn more at delawarebio.org.

NORD (National Organization of Rare Diseases) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Learn more at rarediseases.org.

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe, helping patients find and build communities, gain access to information and resources, and more.

Learn more at globalgenes.org.

Everylife Foundation is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy.

Learn more at everylifefoundation.org.

CORD (Canadian Organization for Rare Disorders) provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.

Learn more at raredisorders.ca.

Eurordis (Rare Diseases Europe) is a non-governmental patient-driven alliance of patient organisations representing 962 rare disease patient organisations in 73 countries.

Learn more at eurodis.org.

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A Proud Sponsor Of…

Project OnRamp, a program designed to connect first-generation college students with paid internships for up to 12 weeks.

Learn more at projectonrampphl.com.

8th Annual Million Dollar Bike Ride. In seven years, the event has raised more than $10 million to fund research and grants to address rare disease.

Learn more at milliondollarbikeride.org.

A PROUD DONOR TO…

Broad Street Ministry, contributing funding for the organization to acquire a mobile unit that will provide access to hygiene items and sanitation facilities to people in some of the poorest areas of the city.

Learn more at broadstreetministry.org.

A Proud Donor and Volunteer For…

Cradles to Crayons, which provides children from birth through age 12, living in homeless or low-income situations, with the essential items they need to thrive—at home, at school, and at play.

Learn more at cradlestocrayons.org.

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Key collaborations

Informed DNA. Our engagement involves designing and supporting a genetic screening and counseling program that will be free of charge to patients with frontotemporal disease.

Learn more at informeddna.com.

Invitae, a leading medical genetics company that facilitates genetic testing and supports early identification of GM1 gangliosidosis and Krabbe disease. Our partnership involves providing clinical trial information to clinicians and patients.

Learn more at invitae.com.

Penn’s Gene Therapy Program, a complex R&D organization with capacity to perform gene transfer studies from basic research to Phase 1/2 proof-of-concept human trials. The program aims to discover transformative genetic-based therapeutics.

Learn more at upenn.edu.

Penn’s Orphan Disease Center, a world-class research and development facility focused on developing transformative therapies using platform technologies that can be deployed across multiple rare diseases.

Learn more at upenn.edu.

ScreenPlus. We co-sponsored the New York newborn screening pilot program led by Melissa Wasserstein, MD. GM1 gangliosidosis is one of the diseases included in the screening.

Learn more at einsteinmed.org/.

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Information for patients and caregivers

Access helpful content for those directly affected by monogenic CNS disorders.

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