Facilitate Scientific Collaborations

NIH Programs Supporting Collaboration

Learn about special programs offered by the NIH at early stages of therapy development.

• NIH ICs: Determine which NIH ICs are involved in researching the rare disease(s) supported by your group.
  • Contact the specific IC to learn about any special programs they have in place for working with patient groups. For example:
    • The National Cancer Institute has an Office of Advocacy Relations , dedicated to working with patient groups. You can contact them directly by phone: (240) 781-3360 or email: nciadvocacy@nih.gov 
• National Center for Advancing Translational Science (NCATS): NCATS has a number of different programs and funding opportunities focused on the discovery stage of therapy development.
  • General information is available on Patient/Community Engagement & Health Information. 
  • Programs that may be of interest to researchers working with your groups are outlined on Work with NCATS.
• Rare Disease Clinical Research Network (RDCRN) : The RDCRN is a special program supported by the Office of Rare Disease Research (ORDR), NCATS, and collaborating ICs. The program funds research teams, called Consortia, that work to better understand rare diseases and move potential treatments closer to the clinic.
  • Consortia are a network of scientists, clinicians, patients, families, caregivers, and patient groups.
  • There are 20 funded programs per cycle, and a cycle lasts 5 years.
  • Consortia can reapply for another 5 years of funding, but new networks will also compete. 
  • Most Consortia include a group of related conditions. 
  • Each Consortia includes multiple clinical and research sites.
  • The most recent Consortia funding was announced Fall of 2019. 
  • The opportunity to apply to become an RDCRN Consortia is usually announced late spring or early summer the year prior to when the funding cycle will start. Thus, currently a new announcement will occur late spring, early summer 2024: RDCRN Funding Information.
  • In addition, RDCRN Conference on Clinical Research for Rare Diseases (CCRRD) occurs about every 2 to 4 years and focuses on rare disease research methodology.
    • Topics and slide decks from past conferences are available.

Resources