Working with Patient Organizations

We differentiate ourselves by some of the most basic, fundamental things: taking the time
to listen and really trying to understand the needs of patient communities.
— David Meeker
Genzyme CEO
Genzyme partners with and supports numerous patient organizations worldwide to achieve our common mission: advocating for and addressing the needs of patients with serious medical conditions.
Collaborating on Shared Goals

As part of Genzyme's commitment to supporting optimal patient care and sustainable health care systems globally, we recognize the importance of fully understanding the needs of the patient communities we serve. We've learned that one of the best ways to accomplish this is by working with patient organizations, who are closely connected to patients' most important concerns and interests.

While partnering with these organizations has long been fundamental to Genzyme's culture and approach, in 2001 we established our internal Patient Advocacy group to formalize our collaborations with the advocacy community. Championing the patient perspective within Genzyme, this team works with rare disease organizations to advocate for access to therapies and foster a sense of community among patients and their families. The Patient Advocacy group develops programs to support advocacy group leaders and disseminates critical disease and health care educational information.

With the launch of our MS franchise, Genzyme established a fully dedicated MS Advocacy team focused on supporting the needs of the patient community. This team supports critical research and broad registry initiatives, in addition to educational and awareness programs in local to global markets. 

Genzyme also provides financial support to patient organizations in the form of grants, which are administered in close compliance with all relevant regulations, to help fund the organizations' events, outreach efforts, and other activities.

Genzyme Patient Advocacy Blog

To connect with the wider rare disease community, our Patient Advocacy team maintains the Genzyme Rare Community website—a platform for sharing news and updates on our and others' advocacy work.

Our Current Partners

Genzyme is proud to partner with patient organizations all over the world. In accordance with the European Federation of Pharmaceutical Industries and Associations (EFPIA) guidelines on relationships between pharmaceutical companies and patient organizations, we publish lists on this website of the organizations with whom we collaborate.

Partner Organizations Lists

View the following lists of our partner organizations, which include information about the types of support we provide:

Activities with patient associations supported by the Sanofi group are listed on the Sanofi Corporate Social Responsibility website.

Guiding Principles

To ensure that our relationships with patient organizations are thoughtful and transparent, we are guided by the following principles:

  • Genzyme recognizes that as a global company, we are subject to often differing laws, rules, and regulations in the many locations in which we do business, and we will always comply with local rules involving interactions with patient organizations.
  • We will respect and ensure the independence of patient organizations in their policies, decisions, and activities, never perceiving or placing their interests as subordinate to our own.
  • Genzyme will neither request nor expect patient organizations to promote any Genzyme product or service.
  • The scope and objectives of any Genzyme collaboration with a patient organization will be open, transparent, and ethical.
  • Genzyme will respect the privacy of all personal information and data we may receive from patient organizations and will not expect them to provide us with any personal patient or family information.
  • We never require that a patient organization receive funding solely from Genzyme, nor will we seek to exclude anyone, including competitors, from making contributions to these organizations. Although there may be occasions when we are the sole source of support, we strongly encourage organizations to pursue and establish multiple funding sources.

Industry Guidelines

Genzyme's own guiding principles are influenced by established industry standards, such as the EFPIA's Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organizations.

Last Updated: 5/13/2015
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PAL Awards

Our Patient Advocacy Leadership (PAL) Awards grant program supports the work of patient organizations focused on lysosomal storage disorders (LSDs), sparking innovation in disease awareness programs and patient support initiatives.

Partnering with MS Patient Organizations

Genzyme is proud to partner with patient organizations on key, large scale initiatives focused on meeting critical unmet needs in the MS community. Learn more about the programs we support:

Humanitarian Partners

Our free drug programs and other humanitarian efforts are made possible with the help of these and other partners: