from discovery to cure

aka NBIADA   |   El Cajon, CA   |
GuideStar Charity Check


EIN: 33-0712327


Our Mission In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world. Our Vision A world in which NBIA Disorders no longer causes suffering or loss of life. 1. To provide a supportive environment for sharing needs, concerns and experiences, and up-to-date treatment and care options. 2. To increase recognition of NBIA among healthcare professionals for early diagnosis and optimal care. 3. To participate with our affiliated NBIA lay advocacy groups in other countries. 4. To build an expanding base of contributors to achieve our vision. 5. To encourage, guide and fund research for treatments and cures for NBIA disorders.

Ruling year info


President & CEO

Ms. Patricia Wood

Main address

2082 Monaco Ct.

El Cajon, CA 92019 USA

Show more contact info

Formerly known as

Hallervorden-Spatz Syndrome Association



Subject area info

Arts and culture


Medical support services

Population served info


People with diseases and illnesses

NTEE code info

Health Support Services (E60)

Alliance/Advocacy Organizations (A01)

Fund Raising and/or Fund Distribution (C12)

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are working to discover treatments and eventual cures for Neurodegeneration with Brain Iron Accumulation (NBIA) disorders, which are ultra-rare. Currently there are 10 NBIA disorders with genes identified, the most recent being in 2012. We understand from the researchers that there may be other genes yet to be discovered in connection with those currently diagnosed as idiopathic NBIA. Since our inception, we have been involved and/or supported every significant discovery regarding these disorders. Typically, families spend years seeking a correct diagnosis for their child/loved one. Thanks to improvements in genetic testing, diagnoses are more readily made than ever before. Once a diagnosis is made, the work begins as families seek proper treatments from the very few clinicians with knowledge about the disorder. They seek support as they face their "new norm" and appreciate connecting with others. We continue to support them with information, advocacy, and connections with others.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Grants

NBIA disorders are ultra-rare and very debilitating. Funding to find treatments and cures is heavily reliant on families of those diagnosed with NBIA. Utilizing the wisdom of our Scientific and Medical Advisory Board to screen applications from researchers, the Board of Directors grants funds. Researchers provide written reports for scientific publication as well as for lay audiences. Monies for the research grants primarily come from donations raised by families dealing with NBIA disorders.

Population(s) Served
People with diseases and illnesses

Families and individuals facing NBIA disorders need information and support to learn more about the condition, and how to access the best care possible. We personally take calls and emails, responding promptly to requests. We provide a robust website filled with information and links to published articles to assist people through their NBIA journey. We maintain a social media presence and volunteers operate online support groups for those wanting to connect.

Population(s) Served
People with diseases and illnesses

We provide an informative newsletter three times per year with articles about research underway, planned, and completed. It also includes information about fundraising activities and donors, and ways to reach out for assistance. Between print and electronic versions, each issue is distributed to 4,500 households.

Population(s) Served
People with diseases and illnesses

Every two years an International NBIA Disorders Association Family Conference is held to bring together families from around the globe along with scientists, clinicians, and researchers. Together, families learn the latest research on the disorders afflicting their loved ones, as well as connect with one another. The Tenth International Conference was May 30 - June 2, 2019. Planning has begun for 2021.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clinicians who have at least 5 NBIA patients in their care.

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Family relationships, Age groups, Ethnic and racial groups, Work status and occupations

Related Program

Education & Family Support

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success


Context Notes

Families dealing with these ultra-rare disorders are better served when they can see a clinician who has some experience treating patients with them. We are working to build this network.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Goal 1: Formalize and expand partnerships and collaborations with other organizations that interact with the NBIA Disorders community. Establish adequate staffing and communication channels to ensure formal, long-term partnerships that are in the best interest of the children and families served.
Goal 2: To provide comprehensive support services to affected families and individuals and to lead advocacy efforts as the recognized authority for this family of genetic disorders.
Goal 3: Increase and expand our Research Grants Program to fund promising research that may lead to major grant support and programs that will hopefully lead to clinical trials and ultimately to treatments and cures.

● Maintain and strengthen linkages between NBIA Disorders Association, members of the NBIA Alliance, the National Organization for Rare Disorders (NORD), National Institutes of Health (NIH), Genetic Alliance, Global Genes Project, EURORDIS, area hospitals and clinics, rare disease organizations, bio-technology companies, pharmaceutical companies, community foundations, private foundations, and family members of individuals with NBIA disorders.
● Expand beyond these partners to other agencies, universities, and medical organizations.
● The president will be expected to oversee the entire operation, including deployment of resources, maintaining the service and educational missions, seeking future sources of revenue, and contracting with institutions and third-party researchers who are part of our Research Grants Program.
● Adopt technology advancements that aim to increase time effectiveness, cost effectiveness, convenience to donors, reporting and analytics, customer relationship management, and optimizing organization operations.
● Recognize website as a capacity building tool that will help NBIA Disorders Association more effectively fulfill its mission. A modern content management system that will allow NBIA to keep the website updated much more easily freeing us to reach our ultimate goal to cure these disorders and one fully responsive to whatever type of technology one is using to access information.
Increase and expand our Research Grants Program to fund promising research that may lead to major grant support and programs that will hopefully lead to multiple clinical trials.

Our Board of Directors is primarily comprised of individuals with a family member diagnosed with an NBIA disorder, so the needs and understanding of the community are clear. In addition, a Scientific and Medical Advisory Board (SMAB) provide scientific and medical guidance regarding research goals and the state of the field. The SMAB assists in reviewing all research calls, and all responses. They also meet several times per year jointly with the board, and are frequent presenters at our biennial family conferences.

NBIA Disorders Association works collaboratively with its growing roster of member families, over 750 families at present, representing them at several large research meetings each year and providing opportunities for them to join NBIA Disorders Association in advocacy on behalf of their families and those affected by these disorders.

NBIA Disorders Association provides information about NBIA through its publications, website, and other educational offerings. Each year, NBIA Disorders Association responds to thousands of email inquiries from individuals, families, teachers, therapists, social workers, medical professionals and researchers.

Recognizing that rare diseases are a global public health challenge, NBIA Disorders Association helped found the NBIA Alliance and has been the fiscal sponsor since 2017. The NBIA Alliance, established in January 2012, is an international umbrella organization for NBIA patient organizations. Currently there are ten countries represented by the Alliance. The are: Canada, France, Germany, Hungary, Italy, Netherlands, Poland, Switzerland and the United States. Our alliance will steadily grow to more partners. The collaboration with the international alliance strengthens our organization and allows us greater collaboration for research, education and information dissemination in the United States and worldwide.

We also collaborate with or are members of: National Organization for Rare Disorders (NORD), Rare Disease Day Partner, Global Genes Foundation Alliance Member, Genetic Alliance member, and RareConnect, a partnership with EURORDIS.

Our organization has funded over 2.3 million in research for NBIA disorders. Grants are awarded to qualified researchers to initiate pilot studies, the results of which are intended to be used to obtain larger multi-year grant funding. Many of these grants have led to the discovery of NBIA genes and the development of mouse and fruit fly disease models.

We are also funding gene therapy, stem cell therapy, repurposing drug therapy, and other cutting edge technology in our quest to help bring us to clinical trials that result in new and effective treatments.

We have held 11 family conferences with families coming from around the world to participate. In addition to the important social interactions possible at these conferences, we also inform families of the latest research initiatives and progress with researchers attending and sharing their work. In addition, we have a program to bring clinicians to these conferences to help them learn more about these disorders so that they can better serve their current NBIA patients and also be able to adequately serve additional NBIA families.

Started in 1996, we were the first NBIA organization formed and continue to be the leading organization for NBIA disorders. We mentor new organizations and collaborate whenever possible as we strive to achieve our ultimate mission of finding cures for all NBIA disorders.


Fiscal year: Oct 01 - Sep 30
Financial documents
2022 Auditor's Report and Financial Statement 2018 NBIA Disorders Assn 2018 FS (Published).pdf
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990


Average of 3.58 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990


Average of 23.4 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990


Average of 13% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990


Revenue & expenses

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data


Balance sheet

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data


Financial trends analysis Glossary & formula definitions

Fiscal Year: Oct 01 - Sep 30

SOURCE: IRS Form 990 info

This snapshot of NBIA DISORDERS ASSOCIATION’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$57,123 -$45,625 $62,812 $331,422 $20,624
As % of expenses -11.7% -12.4% 26.4% 116.2% 7.7%
Unrestricted surplus (deficit) after depreciation -$57,123 -$45,877 $62,408 $331,180 $20,479
As % of expenses -11.7% -12.5% 26.2% 116.0% 7.7%
Revenue composition info
Total revenue (unrestricted & restricted) $361,690 $315,788 $231,050 $564,871 $276,389
Total revenue, % change over prior year -30.1% -12.7% -26.8% 144.5% -51.1%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.2% 0.2% 0.2% 0.0% 0.1%
Government grants 0.0% 0.0% 0.0% 5.4% 0.0%
All other grants and contributions 99.8% 99.8% 99.8% 94.6% 99.9%
Other revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $488,749 $366,939 $238,192 $285,158 $267,484
Total expenses, % change over prior year 49.6% -24.9% -35.1% 19.7% -6.2%
Personnel 23.8% 33.2% 37.3% 26.2% 34.0%
Professional fees 1.8% 2.4% 3.6% 4.7% 2.8%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.1% 0.0%
Pass-through 55.7% 8.0% 18.9% 42.1% 39.1%
All other expenses 18.7% 56.4% 40.2% 26.9% 24.1%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $488,749 $367,191 $238,596 $285,400 $267,629
One month of savings $40,729 $30,578 $19,849 $23,763 $22,290
Debt principal payment $0 $0 $0 $15,002 $0
Fixed asset additions $0 $1,262 $0 $0 $0
Total full costs (estimated) $529,478 $399,031 $258,445 $324,165 $289,919

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 15.1 17.5 23.9 33.0 37.7
Months of cash and investments 15.1 17.5 23.9 33.0 37.7
Months of estimated liquid unrestricted net assets 1.5 0.4 3.8 17.1 19.2
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $616,291 $535,978 $474,876 $784,119 $840,224
Investments $0 $0 $0 $0 $0
Receivables $1,389 $0 $315 $233 $0
Gross land, buildings, equipment (LBE) $2,699 $1,262 $1,262 $1,262 $1,262
Accumulated depreciation (as a % of LBE) 100.0% 20.0% 52.0% 71.2% 82.6%
Liabilities (as a % of assets) 30.7% 29.8% 22.4% 17.3% 22.2%
Unrestricted net assets $59,586 $13,709 $76,117 $407,297 $427,776
Temporarily restricted net assets $369,682 $364,154 N/A N/A N/A
Permanently restricted net assets $0 $0 N/A N/A N/A
Total restricted net assets $369,682 $364,154 $294,200 $242,489 $230,770
Total net assets $429,268 $377,863 $370,317 $649,786 $658,546

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No


The people, governance practices, and partners that make the organization tick.

Form 1023/1024 is not available for this organization

President & CEO

Ms. Patricia Wood

Responsible for the day-to-day running of the organization, research grant administration, family support, organizing biannual family conferences and serving as the liaison with other organizations and medical professionals.

As the organization's representative in the European Union funded grant titled Treat Iron-Related Childhood-Onset Neurodegeneration (TIRCON), she handles grant related dissemination activities. Some of these activities are the preparation of information packages on NBIA for clinicians, the scientific community and families; creating alliances with other NBIA lay advocacy organizations; implementing an educational protocol for training workshops on NBIA disorders and informing the public about TIRCON activities and results.

Number of employees

Source: IRS Form 990


Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.


Board of directors
as of 01/31/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Sarah Doerr

NBIA Disorders Association

Term: 2022 - 2024

Matthew Ritzman

Meg Talley Dyer

Sarah Doerr

Amber Denton

Jennifer Sanchez

Jennifer Wildvank

Carolyn Banik

Jeff Gartman

James Bourgeois

Vanessa Smith

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

Organizational demographics

SOURCE: Self-reported; last updated 10/6/2021

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.


The organization's leader identifies as:

Race & ethnicity
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data


No data