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.
Rare Disease Day
February 28, 2014 marks the seventh international Rare Disease Day, coordinated by EURORDIS and other patient organizations. As a pioneer in the field of rare genetic diseases, Genzyme has supported this initiative since its inception. Working closely with local and international patient advocacy groups around the world, Genzyme helps to raise awareness of rare diseases and support this community.
Learn more about our global Rare Disease Day initiatives.
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. This team champions the patient perspective within Genzyme, as well as works with rare disease organizations to:
- Raise awareness and disseminate critical disease and health care educational information
- Advocate for access to therapies
- Help foster a sense of community among patients and their families
- Develop programs, such as training sessions and networking events, that support advocacy group leaders
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.
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.
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 (most likely with new organizations focused on rare diseases), we strongly encourage organizations to pursue and establish multiple funding sources.
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.