Toolkit Getting Started
If your patient group is new to supporting research, Getting Started can help you understand therapy development, the importance of patient input, basic disease research and ways to connect with partners.
Whether you are leading a new patient group formed to drive the development of a treatment or cure for your disease or an established patient group that is considering adding research initiatives to your group’s mission, the information and resources in the Getting Started section will provide an overview of the medical therapy development process, the increasing role of patient groups in the process, basic research questions that need to be understood prior to therapy development, and methods to make the connections needed to drive the process forward. The stages of the therapy development process are described in more detail in subsequent sections, so please do not be overwhelmed by the information in the Getting Started overviews. Instead, congratulate yourself on taking this first step to join other patient groups who have become an integral part of the therapy development process. If you are leading a group that has already been involved in therapy development for your disease, you may wish to skip to one of the later sections to find information and resources that can help you develop next steps, overcome challenges or fill in pieces of the process that may further your efforts.