Genzyme is committed to supporting optimal care and building sustainable health systems for people living with serious, unmet medical needs. Given the urgency of these needs, it is imperative that we understand and partner with the communities we serve to achieve our common mission: to discover and deliver transformative therapies for patients with rare and special unmet medical needs, providing hope where there was none before.
Why Patient Advocacy?
In the rare disease space, advocacy efforts are particularly critical, as many of these disorders are not widely known and receive little visibility. Because of Genzyme’s longtime focus on rare diseases, we’re acutely aware of these challenges. That’s why patient advocacy has become a deeply rooted and fundamental component of our culture. Over the years we’ve learned the value of partnering with patient organizations, which are closely connected to patients’ most important concerns.
Genzyme has always been a company full of patient advocates and it remains that way today.— Jamie Ring, Genzyme Patient Advocacy
In 2001 our Patient Advocacy group was formally established to further Genzyme’s legacy of building relationships with the advocacy community, and we have since supported the work of countless patient organizations around the world. We believe our diverse efforts not only help individual groups, but can also build bridges across different disease communities so that they and their leaders may learn from one another’s experiences.
Activities & Programs
Collaboration with patient organizations is key to maximizing our shared goals. But in addition to working with these external stakeholders, Patient Advocacy also champions the patient perspective within Genzyme, ensuring that key decision-makers at the company are aware of patient communities’ most pressing concerns.
The Genzyme culture is dedicated to holding our
relationships with patients and patient organizations as one of our most important values. Being a part of that culture is a great honor.— Kathleen Coolidge, Genzyme Patient Advocacy
Here are just a few examples of our many initiatives—some past, some still ongoing:
- Our Patient Advocacy Leadership (PAL) Awards program launched in 2011, which awards competitive grants to non-profit organizations serving the Lysosomal storage disorder community
- The inspiring Expression of Hope exhibits, which showcase the artwork of people affected by Lysosomal storage disorders
- Hosting Global Advocacy Leadership Summits that bring together leaders from within the rare disease community to network with one another as well as interact with Genzyme staff and executives
- Training sessions to help patient group leaders build skills and improve the efficacy of their group’s efforts
- A wide range of fundraising, educational, and awareness events
We invite you to visit our blog, featured on this website's homepage, which will continue to highlight many of the activities and programs we sponsor or participate in.
From healthcare advocacy and education to marketing and communications, the Patient Advocacy staff brings a diverse range of skills, experiences, and backgrounds to our advocacy efforts.
Most of our group is based at Genzyme's world headquarters in Cambridge, Massachusetts. However, we also have team members based in other U.S. regions and Europe and we maintain close communication with Genzyme offices globally, helping us stay connected with specific local issues.