ARISEN Pilot Research Grant 2026

Request for Applications (RFA)

ARISEN Rare Disease Clinical Research Network (RDCRN) Pilot Grants
RFA No.: RDCRN-ARISEN-PG-2026
Release Date: February 2, 2026
Letter of Intent Due: March 6, 2026
Invitation to Submit Full Application: March 13, 2026
Application Due: April 23, 2026
Anticipated Award Notification: June 16, 2026
Anticipated Project Period Start Date: August 1, 2026
 
1. Purpose
The Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network (ARISEN) invites applications for pilot research projects that accelerate clinical research in rare diseases aligned with the consortium’s mission. ARISEN includes autoimmune encephalitis, Rasmussen syndrome, and new onset refractory status epilepticus (NORSE), including its subtype with prior fever, Febrile Infection-Related Epilepsy Syndrome (FIRES). 
 
The program aims to:
  • Generate preliminary data to support future extramural funding (e.g., NIH R01/U01/U54) related to the above disorders in any manner, including etiology, pathophysiology, overlap and distinctions, best management, and prognostication.
  • Develop or validate tools such as biomarkers, endpoints, and patient-reported outcomes (PROs).
  • Foster multidisciplinary, multi-center collaborations across RDCRN sites and patient advocacy groups (PAGs).
 
This ARISEN Pilot Award complements the ARISEN Early-Stage Investigator Research Fund Award, which is limited to Early Stage Investigators as defined by the NIH or to investigators new to the rare disease field. Both ARISEN pilot opportunities follow the same application submission and annual award cycle. Applicants may only apply to one funding mechanism per cycle.
 
2. Available Funding
  • Number of Awards: One
  • Budget: Up to $45,000 total costs
  • Project Period: 12 months
  • Funding Source: ARISEN U54HD122209
 
3. Eligibility
The PI must hold an MD, PhD, MD/PhD, DO, RN or more advanced, PharmD, DDS, DVM, or equivalent and be a faculty member at U.S.-based academic institution.
 
4. Research Scope and Priorities
Priority will be given to patient-oriented projects focused on the diseases in ARISEN and those that address clinical research knowledge gaps, leverage RDCRN infrastructure, demonstrate patient engagement, and show potential for measurable impact and sustainability. Research must fulfill the definition of clinical and/or translational research. Animal studies are not permitted. Projects not addressing the ARISEN diseases will not be considered for funding.
 
5. Application Components
Letter of Intent: A two-page LOI must be submitted by 11:59 PM ET on March 6, 2026
See LOI template here: https://tinyurl.com/ARISEN-PG-LOI
 
Applicants will be notified by March 13, 2026, via email, that either: 1.)They are invited to submit a full proposal; or 2.) Their project has not been selected to move forward in the grant process. 

Full Application: If invited to submit a full application, the application must be submitted by 11:59 PM ET on April 23, 2026. 

Full applications must be submitted as a single PDF and include:
  • Title Page: to include PI and co-investigators with affiliations, and amount requested (1 page)
  • Abstract (≤300 words)
  • Specific Aims (1 page)
  • Research Strategy: Background, Innovation, Approach, Timeline & Milestones including the Future Funding Plan specifying the grant mechanism and timing for application submission (4 pages)
  • Team & Environment (1 page)
  • Biosketches of PI and key personnel (SciENcv format; see Link here: https://grants.nih.gov/grants/forms/biosketch)
  • Letters of Support - optional
  • Budget (1 page)
  • Budget Justification (1 page)
  • References (no limit)
 
All application documents must adhere to the following formatting requirements:
  • Page Size: Standard U.S. letter (8.5” × 11”).
  • Margins: Minimum of ½” on all sides (top, bottom, left, right).
  • Font: Arial, 11-point size.
  • Page Limits: Page limits include all content, including text, figures, and tables.
  • Figures & Images: All figures, tables, and images must be clearly legible when printed at 100% scale on 8.5” × 11” paper.
 
6. Submission Instructions
Format: Single PDF labeled “RDCRN-ARISEN-PG-[PI LastName]-[Year].pdf.”
Submission: via RDCRN grant submission portal (https://grants.rarediseasesnetwork.org/grants/ARISEN-PG-2026)
Questions: Please email Grace Gombolay (grace.yoonheekim.gombolay@emory.edu), Lawrence Hirsch (lawrence.hirsch@yale.edu), and Kaci McCoy (kaci.mccoy@emory.edu) 
 
7. Review Process
Applications will undergo NIH-style peer review by RDCRN investigators, PAG representatives, and designated experts. Review criteria include Significance, Innovation, Approach, Investigators, Environment, and Impact/Sustainability.
 
8. Grant Number & Acknowledgment Requirement
All applications must include the appropriate NIH grant number supporting the Rare Diseases Clinical Research Network (RDCRN) consortium and must use the following acknowledgment in all publications, presentations, press releases, and research products resulting from this pilot award:
 
“This project is supported by the Rare Diseases Clinical Research Network (RDCRN), an initiative of the National Center for Advancing Translational Sciences (NCATS) and the Eunice Kennedy Shriver National Institute Of Child Health & Human Development, funded through the National Institutes of Health (NIH) Grant Number: U54HD122209. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.”
 
9. Data Standards & Sharing
Projects must use RDCRN common data elements as applicable and deposit de-identified datasets as required.
 
10. Budget Guidance
Allowable costs include personnel effort, participant compensation, assays, supplies, imaging, publishing, and core fees. Travel is allowed and limited to $2,000. Equipment >$5,000 generally not allowed without pre-approval.
 
11. Ethical & Regulatory Requirements
Projects must comply with IRB, HIPAA, FDA regulations, ClinicalTrials.gov registration for interventional studies, ARISEN, and the RDCRN monitoring policies.
 
12. Future Grants
All awardees must submit an external grant application within 12 months of the end of the budget award for this grant. Failure to do so will result in ineligibility for future ARISEN Pilot or Career Enhancement Awards.
 
13. Obligations of Awardees 
  • Present scientific progress once annually (~6 months after the award) to ARISEN Executive Leadership Team.
  • Present scientific work-in-progress once annually at the annual ARISEN symposium.
  • Submit a final scientific report within 60 days of project completion.