Becoming Research Ready
Advocacy organizations, individuals and caregivers have an important role in advancing research. By uniting your community and collecting patient-generated data and insights, you can increase what is known about your rare diseases, improve standards of care, and inform drug development in ways that can lead to life-changing or lifesaving results.
Working Together
RareLaunch®
The RareLaunch® program offers access to on-demand trainings and tools for capacity-building. Whether you are looking to start a nonprofit or advance research at your organization, RareLaunch® will prepare you for your role in each phase of the drug development process, including natural history study and pre-clinical data collection, awareness, advocacy, forming a medical and scientific advisory committee, and working with academic research partners and industry.
If you would like to learn more, please visit the NORD RareLaunch Program.
Listening Sessions
In collaboration, the US Food and Drug Administration and NORD created the Rare Disease Patient Listening Session program as an opportunity to speak directly to FDA staff about what it is like to live with a specific rare disease. These important events help regulators understand patients’ perspectives, needed treatment options, and meaningful outcomes for individuals and caregivers. These sessions inform product development, clinical trial design, and regulatory thinking.
To learn more and read summaries of past and upcoming meetings, please visit the FDA Patient Listening Session website.
If you would like to host a Patient Listening Session, please contact the FDA using the following form: www.fda.gov/PatientsAskFDA.
Questions? We are here to help. Please contact us.
Advancing research
Our research goals are to support effective treatments and cures, eliminate knowledge gaps, provide funding opportunities, and advocate for favorable policies.
How Patients Can Get Involved in Advancing Research
To stay informed and learn about opportunities to get involved, sign up to receive research news and updates.
