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Summary Rare disease communities have different needs and research is important for finding solutions. Patients should be involved in research to make it successful. This can be done through patient-led research, patient-partnered research, and patient-centered research. Here are some practical ways to empower patients and work together: Listen and Learn : Engage with patients and other stakeholders by asking questions and having discussions. By talking and sharing ideas, we can find common goals and work towards them. Recognize Expertise : Patient organization leaders have valuable knowledge and connections in their communities. They can help address important research questions. Let's value their expertise and work together as partners. Collaborate at Every Step : Successful research needs collaboration. Create groups with patients, researchers, and industry professionals. Include patients in discussions about research findings. Involve patient organizations in reviewing clinical trial materials. By working together, we can make research more meaningful. Share Results : Celebrate progress and share findings with everyone. Use simple language to explain complex ideas. Bring stakeholders together to celebrate achievements. Ask the community for input on what needs to be prioritized next. In conclusion, it is important to involve rare disease patients in research. By embracing diverse perspectives, recognizing patient organization expertise, collaborating at each step, and sharing findings with the community, we can create research that meets the needs of rare disease communities. Want to learn more? Continue reading below for more Rare disease communities have diverse needs that necessitate various research efforts, ranging from focus groups and surveys to natural history studies and clinical trials. The involvement of these communities is key to ensure the success of research and drug development: The FDA defines patient-focused drug development (PFDD) as "a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation". When patients, families, and patient organizations lead these efforts, this is patient-led research . When patients work alongside others as collaborators, this is patient-partnered research . When patients advise and inform the design, execution, and interpretation of research, we call this patient-centered research . Let's explore practical considerations for developing initiatives that empower patients and foster collaboration among all stakeholders.