Advocacy Groups

As a key influencer and mobilizer of the patient community, advocacy groups play a critical role in supporting and promoting the needs of people affected by rare diseases. While some groups are highly organized associations representing thousands of patients, others may be small, one-person volunteer operations that focus primarily on patient care and support. Regardless of size, each organization plays a critical role in supporting the patient community and has the ability to influence the wider rare disease community and represent the needs of their members to industry, the media, and government and policy makers.

Patient Organizations

We recognize that relationships with advocacy groups around the world are vital to understanding the needs and improving the wellbeing of patient communities.
See lists of patient organizations

Principles of Collaboration

Whether we’re providing organizations with information about our programs or working together on education and outreach, we adhere to a defined set of principles that guide our collaborations.
Learn more about our principles of collaboration

Submit Your Group

Are you part of an organization that advocates for patients in a rare disease community or communities? We’d love to learn more about your efforts and activities.
Submit your group’s information to Genzyme Patient Advocacy