Immune Deficiency Foundation

Quick Stats

• Annual Giving: $150,000 - $200,000
• Success Rate: 20-25% (approximately 4-5 grants from ~20 applications annually)
• Decision Time: 6-7 months
• Grant Range: $25,000 - $50,000+ (exceptional proposals)
• Geographic Focus: United States

Contact Details

• Website: www.primaryimmune.org
• Phone: 800-296-4433
• Email: idfgrants@primaryimmune.org (for grant inquiries)
• Address: 7550 Teague Road, Suite 220, Hanover, MD 21076

Overview

Founded in 1980, the Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment, and quality of life for people with primary immunodeficiency diseases (PI) through fostering a community empowered by advocacy, education, and research. With over 40 years of operation, IDF manages an annual budget exceeding $4 million and has established a formal Research Grant Program that has awarded more than $800,000 in research funding since 2016. The organization supports innovative research projects that align with their mission to advance understanding and treatment of primary immunodeficiency, with a particular focus on translational research that can directly impact patient care and quality of life. In 2023, IDF was recognized with the National Organization for Rare Disorders (NORD) Abbey S. Meyers Leadership Award for their exceptional work in the rare disease community.

Funding Priorities

Grant Programs

• Research Grant Program: $25,000 - $50,000+ (annual cycle for innovative PI research projects)
  • Application method: Online portal with annual deadline (typically December/January)
  • Decision timeline: 6-7 months from submission
  • Michael Blaese Research Grant Award: Highest-scored application receives additional recognition

Priority Areas

• Translational research with potential for near-term patient impact
• Novel therapeutic approaches for primary immunodeficiency
• Quality of life improvements for PI patients
• Early diagnosis and newborn screening initiatives
• Gene therapy and precision medicine approaches
• Health services research and healthcare utilization studies
• Immunoglobulin therapy optimization
• Infection prevention and management in PI patients

What They Don't Fund

• Direct patient financial assistance (referred to partner organizations)
• Clinical care costs
• Institutional overhead/indirect costs
• Equipment purchases exceeding project scope
• International projects (U.S. researchers only)
• Basic science without clear translational potential

Governance and Leadership

Key Leadership:

• Jorey Berry: President & CEO - "Our research grant program is designed to support innovative projects that will directly impact the PI community within the next few years, not decades."
• Katherine Paris, MHA: Senior Director of Health Research & Policy - Oversees the grant program and serves as primary contact for applicants
• Scientific Advisory Committee: Comprised of leading immunologists and clinicians who review all grant applications

The organization maintains a robust peer review process modeled after the NIH system, with external reviewers from major academic medical centers providing independent evaluation of all proposals.

Application Process & Timeline

How to Apply

Applications are submitted through IDF's online grant portal at www.primaryimmune.org/research-grants. The process includes:

1. Letter of Intent submission (recommended but not required)
2. Full proposal submission via online portal
3. Required documents: Research proposal (5-page limit), budget justification, biosketches, institutional approval letters
4. Annual application deadline: Typically December/January (check website for exact date)

Decision Timeline

• Application opens: September/October
• Deadline: December/January
• Peer review: February-April
• Scientific Advisory Committee review: May
• Board approval: June
• Award notification: June/July
• Funding begins: July/August

Success Rates

• Approximately 20-25% success rate
• 4-5 grants awarded annually from approximately 20 applications
• 24 total grants awarded since 2016 inception

Reapplication Policy

Unsuccessful applicants are encouraged to reapply with revised proposals incorporating reviewer feedback. IDF provides detailed reviewer comments to all applicants. No waiting period required for reapplication.

Application Success Factors

Based on IDF's stated priorities and recently funded projects:

• Patient impact focus: IDF specifically looks for projects that can "improve the lives of PI patients in the near future." Successful applications clearly articulate how findings will translate to patient care within 3-5 years.
• Community engagement: Projects involving the PI patient community directly, such as the funded Yale study on "Patient and Caregiver Perspectives on Subcutaneous IG Therapy," demonstrate strong alignment with IDF's mission.
• Innovation in established areas: IDF values novel approaches to known challenges. Dr. Manish Butte's funded project on "AI-Powered Detection of Immunodeficiency" exemplifies this—applying cutting-edge technology to improve diagnosis.
• Clear methodology: Katherine Paris emphasizes that successful proposals have "clearly defined objectives and robust methodology that our reviewers can evaluate confidently."
• Collaboration strength: Multi-institutional projects or those with strong clinical-research partnerships tend to score higher in peer review.
• Budget justification: IDF carefully reviews budgets. Successful applications provide detailed justification for all expenses and demonstrate efficient use of funds.

Key Takeaways for Grant Writers

• Focus on translational impact—IDF prioritizes research that can improve patient care within 3-5 years, not basic science with distant applications
• Emphasize patient quality of life improvements and practical outcomes in your proposal narrative
• Consider submitting a Letter of Intent to gauge interest and receive early feedback before full proposal preparation
• Budget requests of $25,000-50,000 are standard; exceptional proposals may receive higher support but require strong justification
• Leverage IDF's patient community connection—proposals involving patient perspectives or addressing community-identified needs align strongly with mission
• Review previously funded projects on IDF's website to understand successful proposal characteristics
• Contact Katherine Paris (kparis@primaryimmune.org) with specific questions—IDF encourages pre-application communication

References

• Immune Deficiency Foundation Official Website - Research Grants Program (www.primaryimmune.org/research-grants) - Accessed March 2024
• IDF 2023 Annual Report - Published June 2024
• "IDF Awards $200,000 in Research Grants for 2025" - IDF Press Release, June 28, 2024
• "IDF Announces 2024 Research Grant Recipients" - IDF News, July 2024
• IDF Form 990 Tax Filing - 2022 (EIN: 52-1214782)
• NORD Abbey S. Meyers Leadership Award Announcement - November 2023
• IDF Research Grant Program Guidelines and Application Instructions - 2024 Cycle
• Interview quotes from Jorey Berry and Katherine Paris - IDF Research Program Overview Video, 2024