Immune Deficiency Foundation
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Educational Publications and Social Networking
Founded in 1980, the Immune Deficiency Foundation (IDF) offers those living with primary immunodeficiencies a wealth of resources, programs, and services developed by dedicated professionals and world-renowned immunologists.
Resources include IDF educational publications for both patients and healthcare professionals; patient education meetings; and individualized assistance with insurance questions, physician location, treatment, and peer support. IDF’s website and social media further connect people living with PI. IDF Friends is a social network, which connects individuals and family members to others in the community. IDF Reel Stories includes videos of patient and family members’ experiences, and users can create videos to share their own stories. The entire community can stay updated about news, events, and initiatives through IDF’s blogs: IDF Community in Action, IDF Policy Matters, IDF SCID Newborn Screening, IDF Zebra Challenge, and IDF Plasma Center Partners.
Advocacy
IDF maintains a full-scale advocacy program focused on national and state healthcare issues. The IDF Advocacy Center closely follows health news and provides online Action Alerts to notify the community about pertinent issues. The Center provides a Grassroots Advocacy Toolkit for IDF volunteers to contact local and national representatives to promote healthcare policy and legislation that positively affect those living with PIDD. To help develop public policy initiatives for improved diagnosis and treatment and provide crucial insight into the personal impact of PIDD, IDF conducts national patient surveys.
Medical Research and Continuing Education for Healthcare Professionals
IDF fosters opportunities for medical research and continuing education programs so healthcare professionals may improve the diagnosis and treatment of patients. The IDF Consulting Immunologist Program provides physicians the opportunity to consult with expert clinical immunologists regarding patient-specific questions and obtain valuable diagnostic, treatment and disease management information. IDF’s LeBien Visiting Professor Program offers teaching hospitals the opportunity to engage prominent clinical immunologists in leading Grand Rounds and other educational activities directed at the treatment of patients with primary immunodeficiency diseases. The United States Immunodeficiency Network (USIDNET) is a patient registry and research consortium of leading immunologists created to advance knowledge of PIDD. The IDF Online Course for Nurses: Primary Immunodeficiency Diseases and Immunoglobulin Therapy is a free, accredited course that enhances the knowledge of the nurse clinician by providing an update on PIDD and immunoglobulin therapy.
Patient Education
IDF provides a broad range of educational initiatives for patients and families to learn from healthcare professionals, connect with others in the PI community, and ask specific questions related to their diagnosis. Programming centers around the patient journey and ranges from community-based forums, summits related to particular topics, and large-scale conferences for the entire community.
Where we work
Awards
Champions of Change 2015
White House
Affiliations & memberships
National Organization for Rare Disorders - Member
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of individuals participating in IDF programming that provides connection and educational opportunities
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Patient Education
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Added all attendees from conferences, forums, summits, GCG, teen, and Walk events.
Number of partnerships with diverse organizations
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Advocacy
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Increased traffic to Plasma Hero website and promotional materials
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Educational Publications and Social Networking
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Educating more individuals about the importance of plasma will help steady the supply of IG Therapy, a common form of treatment for someone with PI.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planHow we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
It is difficult to find the ongoing funding to support feedback collection, It is difficult to identify actionable feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Immune Deficiency Foundation
Board of directorsas of 03/15/2024
Tracy Shaw, PhD
Head of Content & Client Engagement Strategy at Equitable
Term: 2022 - 2025
Kathleen Sullivan
Tracy Shaw
Jason Angelos
Pete Atherton
Seth Kaufman
Harper Spero
Sonia Vohnout
Jorey Berry
IDF President & CEO
Peter Wang
Charlene Grabowski
Colleen Dansereau
Andrew Robins
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
Equity strategies
Last updated: 03/15/2024GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.