Empower Your Patient Community Voice


Since NCATS Toolkit was first launched, the power of the patient voice in the therapy development process has continued to grow thanks to trailblazing patient group leaders. Patient group leaders, like yourself, continue to find new paths to involvement. Furthermore, in most cases, patient group involvement is essential to all stakeholders, including academic researchers, startup research companies, the larger pharmaceutical industry, and the U.S. Food and Drug Administration (FDA).

Opportunities for your group to become involved are highlighted in each of the subsequent sections of NCATS Toolkit. However, some of the benefits of a collective patient voice are summarized here, along with multiple resources for those who would like to learn even more about the growing involvement of patients in the therapy development process. Though there is no one-size-fits-all approach to the development of therapies, the involvement of your group can establish that the development process is patient centered from the earliest stages to the last. 

If you are not involved in a patient group, finding or forming a group may be an important first step, so NCATS Toolkit also includes several resources that can help you take that step.


Finding a Group
GARD Organization Database Genetic and Rare Diseases Information Center (GARD) (link)
Starting a Patient Group
GARD Guide: Support for Patients and Families Genetic and Rare Diseases Information Center (GARD) (link)
Steps to Nonprofit Formation National Organization for Rare Disorders (NORD) (link)
Nonprofit Resources National Organization for Rare Disorders (NORD) (link)
What is a 501(c)(3)? Foundation Group (link)