Jodie Gillon Global Medical Lead, Patient Engagement Rare Diseases at Pfizer discusses Pfizer’s role in patient advocacy.
Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups. We also include information about how to connect with others when your specific condition does not have a support and advocacy group.
Nonprofit support and advocacy groups may be referred to as nonprofits, patient support groups, condition-specific organizations, advocacy groups, public charities, or registered charities. These terms tend to be used interchangeably rather than being specific to the focus of the group. It is best to look beyond the label to find out what the group offers. In the remainder of this guide, we will refer to these groups as nonprofit advocacy groups.