Celiac Disease Foundation
Celiac Disease Foundation
20350 VENTURA BLVD STE 240
Woodland Hls CA 91364-2469
Woodland Hls CA | IRS ruling year: 1995 | EIN: 95-4310830
Mission not available
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20350 VENTURA BLVD STE 240
Woodland Hls CA 91364-2469
Woodland Hls CA | IRS ruling year: 1995 | EIN: 95-4310830
Mission not available
Great
This charity's score is 100%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores: 85% Accountability & Finance, 10% Leadership & Adaptability, 5% Culture & Community. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
Celiac Disease Foundation has earned a 100% for the Accountability & Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY 2021, which is the most recent Form 990 currently available to us.
Learn more
Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).
The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.
Source: IRS Form 990
An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:
Total Revenue Amount | Expectation to Receive Credit |
---|---|
$1 million or higher | Expected to complete an audit |
$500,000 - $1 million | Expected to complete an audit, review, or compilation |
Less than $500,000 | No expectation (removed from scoring methodology) |
Source: IRS Form 990
Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.
Liabilities to Assets Ratio | Amount of Credit Received |
---|---|
Less than 50% | Full Credit |
50% - 59.9% | Partial Credit |
60% or more | No Credit |
Source: IRS Form 990
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
Program Expense Percentage | Amount of Credit Received |
---|---|
70% or higher | Full Credit |
60% - 69.9% | Partial Credit |
50% - 59.9% | Zero Points for Program Expense Score |
Below 50% | Zero Points for Both Program Expense AND Liabilities to Assets Scores |
Source: IRS Form 990
No Data Available
Revenue and expense data is not available for this organization. This data is only available if this charity has at least one year of electronically-filed Form 990 data filed within the last six years.
No Data Available
Key Persons data is currently unavailable for this organization. This data is only available if this charity has at least one year of electronically-filed Form 990 data filed within the last six years.
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Activities:
Scientific research (diseases) (BMF activity code: 161)
Other health services (BMF activity code: 179)
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
Affiliation:
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Celiac Disease Foundation) or EIN (954310830) in the 'Search Term' field.
This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.
Celiac Disease Foundation reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Grants Sent
How COVID-19 impacted the organization's operations financially:
2020 mid-year donations declined so the Celiac Disease Foundation was able to receive PPP loan funding which allowed fort the full staff to remain employed.
How COVID-19 impacted the organization's delivery of programs:
The Foundation shifted to a fully virtual operation, providing support and programming online. Staff developed a COVID resource center at https://celiac.org/coronavirus-information/ that has had more than 200,000 visitors to date. We were able to deliver a full-day virtual Patient Education & Advocacy Summit to more than 1700 registrants with thousands more viewing the recorded presentations at https://celiac.org/what-you-need-to-know-video-series/. We developed an online advocacy training program at iadvocate.celiac.org and a school training program at school.celiac.org. We expanded our patient recruitment services at iqualify.celiac.org, including implementation of an in-house call center to speed recruitment. We also presented virtually to Congress and NIH to assure research funding for celiac disease, and presented our patient advocates to the FDA to amplify the patient voice in therapeutics development.
How this organization adapted to changing conditions caused by COVID-19:
In shifting to a fully virtual operation we modifed our policies and procedures to accomodate remote work. In addition to the development of multiple online programs and trainings, we moved our annual peer-to-peer fundraising event, the CDF Turkey Trot, to a hybrid event where participants used an app to track their steps which replicated moving from New York to California, unlocking gluten-free coupons along the way. Participants walked or ran with their covid pods, alone, or with their pets, or counted their steps through yoga, dance, gardening, housecleaning, among other forms of movement. We had participants from around the world and most of the 50 states!
Innovations the organization intends to continue permanently after the pandemic:
The programs mentioned above will continue to be supported online. This year's Turkey Trot will continue with a strong virtual presence, as well as a live event in New York, COVID permitting, to allow our celiac community to engage with one another. We will also continue with a virtual Patient Education & Advocacy Summit as this allowed so many more to participate and have their questions answered.
Not Currently Scored
Celiac Disease Foundation cannot currently be evaluated by our Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
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No 990 Program Data Found
Celiac Disease Foundation has earned a 100% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Learn more
100% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective.
Who are the people you serve with your mission? Describe briefly.
The Celiac Disease Foundation serves all people with celiac disease, those who care for them, and their social networks.
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Community meetings or town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email
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
With whom does your organization share the feedback you got from the people you serve?
The people we serve, Our staff, Our board, Our funders, Our community partners
How has asking for feedback from the people you serve changed your relationship with them or shifted power - over decisions, resources, rules or in other ways - to them?
Since inception, the Celiac Disease Foundation has used feedback to drive strategic planning, and programming. The primary concern for those with celiac disease is that there is no therapeutic treatment or cure for celiac disease, primarily due to a lack of investment in celiac disease research by our federal government. Based on this feedback, the Foundation has invested heavily in establishing the iCureCeliac patient registry to provide researchers with both the quantitative and qualitative data needed to understand patient needs, and the iQualifyCeliac patient recuitment platform to speed celiac patients into studies and clinical trials. The Foundation has also made deep advocacy inroads in Washington DC to compel NIH to fund celiac disease research.
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
In 2021, the Celiac Disease Foundation moved its annual Patient Education & Advocacy Summit to a virtual platform due to the pandemic. With more than 1,700 registrants from around the globe and thousands more viewing the recorded presentations, the Foundation was able to educate and connect with those who did not have the resources to travel to a terrestial meeting. Participants overwhelming requested in the post-Summit evaluation survey that the Foundation continue with a digital option for future Summits. Because of this feedback, the 2022 Patient Education & Advocacy Summit will be virtually presented.
This organization has not provided information regarding the Equity Practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Celiac Disease Foundation has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Learn more
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
Celiac disease is one of the world’s most prevalent genetic autoimmune diseases, affecting an estimated 3 million Americans, 70-80% of whom are undiagnosed. Causing the body to attack its own small intestine, it can lead to many other devastating health conditions, including cancer. Unfortunately for the millions who suffer, celiac disease has largely been ignored by our federal government which provides little to no funding for research nor for public awareness of its serious consequences. Through strategic investments in research, education, and advocacy, the Celiac Disease Foundation seeks to remedy this by accelerating treatments and a cure.
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
Since its founding in 1990, the Celiac Disease Foundation has funded and executed international initiatives in three principal areas to bring an end to the suffering caused by celiac disease: medical research, patient and healthcare provider education, and public policy advocacy. Our vision is a highly optimistic but credible shared dream of what is possible: By 2025, all Americans with celiac disease will be diagnosed and treated.
Source: Nonprofit submitted responses
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Achieve rapid diagnosis and treatment of celiac disease by supporting research initiatives, studies and clinical trials, and educational programming and resources for healthcare providers.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Achieve rapid diagnosis and treatment of celiac disease through expanded patient education and support programs and tools.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Three: Advocate to influence private and public sector policies to improve the quality of life for all people affected by celiac disease.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
The nonprofit provides evidence of investment in leadership development
Celiac Disease Foundation staff enrolled in the Michigan State University Extension Certificate of Excellence in Nonprofit Leadership and Management program, an 8 course online program that includes courses in: • Strategic Planning • Resource Development • Board Governance • Marketing • Mission Based Management • Social Entrepreneurship • Volunteer Management • Strategic Alliances Staff are also encouraged to identify and attend training courses and meetings beneficial to growing in their role, and are required to set annual growth and development goals as part of their performance review, including listing what supports are needed to achieve their goals. Examples of this include serving on advisory panels and committees of national coalition groups.
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
The Celiac Disease Foundation engages in strategic partnerships with patient advocacy groups, medical societies, biopharmaceutical companies, and retail manufacturers. As the North American affiliate to the AOECS, the Foundation promotes global collaboration for drug development and labeling of gluten-free foods and medicines. Through its partnership with NAPSGHAN, the Foundation developed and hosts the online Clinical Guidelines for Pediatric Celiac Disease decision tool, used by thousands of clinicians annually. Other partnerships include serving on the PCORI Patient Engagement Advisory Panel, NHC, NCAPG, and DDNC. The Foundation presents at meetings and publishes peer-reviewed research from its iCureCeliac patient registry. Through its State Advocacy Ambassador, School Guidelines for Celiac Disease Management , Team Gluten-Free, and Student Ambassador and expansive social media programs, the Foundation engages in robust advocacy, community building, training and organizing.
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
The Celiac Disease Foundation adapted to external changes by shifting to a fully virtual operation, providing support and programming online. Staff developed a COVID resource center at https://celiac.org/coronavirus-information/ with more than 200,000 visitors to date. The Foundation was able to deliver a full-day virtual Patient Education & Advocacy Summit to more than 1,700 registrants with thousands more viewing the recorded presentations at https://celiac.org/what-you-need-to-know-video-series/. In response to the need for virtual advocacy training, the Foundation developed an online State Advocacy Ambassador program at iadvocate.celiac.org, preparing advocates to work with their Congressional representatives’ home offices. The Foundation also developed a video-based training program with companion guide to assist schools in meeting federally mandated accommodations for children with celiac disease, found at school.celiac.org. Patient recruitment services at iqualify.celiac.org were expanded, including implementation of an in-house call center to speed recruitment. The Foundation also presented virtually to Congress and NIH to assure research funding for celiac disease, and patient advocates engaged with the FDA to amplify the patient voice in therapeutics development. In shifting to a fully virtual operation, the Foundation modified its policies and procedures to accommodate remote work. In addition to the development of multiple online programs and trainings, the annual peer-to-peer fundraising event, the CDF Turkey Trot, was shifted to a hybrid event where participants used an app to track their steps which replicated moving from New York to California, unlocking gluten-free coupons along the way. Participants walked or ran with their Covid pods, alone, or with their pets, or counted their steps through yoga, dance, gardening, housecleaning, among other forms of movement. More than 2,000 participants engaged from around the world and most of the 50 states.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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