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Genetic disorder and birth defect organizations

There are 1,421genetic disorder organizations in the United States. Combined, these genetic disorder organizationsemploy 52,228 people, earn more than $4 billion in revenue each year, and have assets of $9 billion.
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Job trends for Genetic disorder organizations

Employees per organizationNumber of organizations
0
251
1-10
227
11-25
68
26-100
65
101 to 1,000
82
1,000+
11
Key takeaways for employment stats:

Sizes of genetic disorder organizations

Revenues per organizationNumber of organizations
< $250k
528
$250k to $1M
196
$1M to $5M
135
$5M to $25M
85
$25M to $100M
28
$100M+
6
Key takeaways for revenue stats:

Directory of genetic disorder organizations

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1-20 of 1,421

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD), organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Revenue
$66.4m
Assets
$65.2m
Employees
118
EIN
13-3223946
IRS type
501(c)(3)

Adapt Community Network

Adapt Community Network creates opportunities for disabled individuals by providing pre-schools, adult day programs, work readiness, and family support services.
Revenue
$221.7m
Assets
$396.2m
Employees
2,396
EIN
13-5654532
IRS type
501(c)(3)

Children's Tumor Foundation

The Children's Tumor Foundation is dedicated to ending neurofibromatosis (NF), to fund research, increase public awareness, support patients and families, encourage establishment of NF clinics.
Revenue
$17.0m
Assets
$32.1m
Employees
48
EIN
13-2298956
IRS type
501(c)(3)

National Down Syndrome Society (NDSS)

The mission of the National Down Syndrome Society (NDSS) is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. They have over 350 affiliate groups across the country.
Revenue
$3.4m
Assets
$13.5m
Employees
29
EIN
13-2992567
IRS type
501(c)(3)

Cooley's Anemia Foundation

The Cooley's Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major.
Revenue
$2.3m
Assets
$5.6m
Employees
10
EIN
11-1971539
IRS type
501(c)(3)

Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation drives research, funds innovative therapies, advocates for patients, and supports the CF community to improve lives affected by cystic fibrosis.
Revenue
$248.6m
Assets
$4.7b
Employees
890
EIN
13-1930701
IRS type
501(c)(3)

Cerebral Palsy Association of Nassau County

The Cerebral Palsy Association of Nassau County (CP Nassau) is an independent, not-for-profit health agency serving over 1,800 children and adults with cerebral palsy, developmental and other disabilities.
Revenue
$43.7m
Assets
$28.9m
Employees
951
EIN
11-1723782
IRS type
501(c)(3)

LADACIN Network

LADACIN Network is a non-profit agency whose mission is to provide education, therapeutic, social, residential and support services for people with cerebral palsy and other physical and developmental disabilities in Monmouth and Ocean Counties.
Revenue
$32.3m
Assets
$24.9m
Employees
578
EIN
21-0674715
IRS type
501(c)(3)

Foundation for Angelman Syndrome Therapeutics

Fast funds research, education, and advocacy to find a cure for Angelman Syndrome and related disorders. Based in Austin, TX.
Revenue
$52.5m
Assets
$63.1m
Employees
8
EIN
26-3160079
IRS type
501(c)(3)

Ability Central (CCAF)

CCAF's mission is to serve as an educator, convener, and resource that works collaboratively to ensure communications access for people with disabilities in California.
Revenue
$19.3m
Assets
$54.7m
Employees
105
EIN
61-1411655
IRS type
501(c)(3)

n-Lorem Foundation

The n-Lorem Foundation provides free, personalized antisense oligonucleotide medicines for patients with nano-rare diseases caused by unique single gene mutations.
Revenue
$17.6m
Assets
$20.4m
Employees
22
EIN
84-3288113
IRS type
501(c)(3)

Hope House for the Multiple Multiple-Handicapped

Hope House brings relief and comfort to families with children and adults with autism and other disabilities. Families know their loved ones will receive individualized care and treatment.
Revenue
$10.7m
Assets
$3.9m
Employees
269
EIN
95-2287909
IRS type
501(c)(3)

Hemophilia of Georgia (HoG)

Dedicated to providing services and support for people who have hemophilia, von Willebrand Disease, and other inherited bleeding disorders.
Revenue
$28.7m
Assets
$86.5m
Employees
88
EIN
58-1175625
IRS type
501(c)(3)

Cerebral Palsy Transport

To provide motor vehicle transportation to persons with disabilities served by United Cerebral Palsy Association of New York state.
Revenue
$6.3m
Assets
$2.3m
Employees
79
EIN
13-3409801
IRS type
501(c)(3)

United Cerebral Palsy Seguin of Greater Chicago

UCP Seguin of Greater Chicago, with its rich heritage spanning over 60 years, currently serves over 650 children and adults with developmental disabilities and other special needs in 65 Chicagoland communities.
Revenue
$51.6m
Assets
$35.6m
Employees
600
EIN
36-2894174
IRS type
501(c)(3)

My Own Place

My Own Place improves the quality of life of all persons with intellectual and developmental disabilities by maximizing one's independence by advocating and providing a standard of living that is driven by choices, preferences and desires.
Revenue
$14.1m
Assets
$18.8m
Employees
126
EIN
20-1560679
IRS type
501(c)(3)

Unified Community Connections

Unified Community Connections provides a broad range of services tailored to meet the unique needs of each the individuals served, helping to fulfill their hopes and dreams by allowing them to live as independently as possible.
Revenue
$30.4m
Assets
$32.2m
Employees
614
EIN
52-0696384
IRS type
501(c)(3)

Foundation for Prader Willi Research (FPWR)

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder.
Revenue
$5.1m
Assets
$8.3m
Employees
12
EIN
31-1763110
IRS type
501(c)(3)

Cerebral Palsy League (CPL)

The Cerebral Palsy League will be recognized as the highest quality provider of programs and services addressing the needs of individuals with disabilities and their families through all stages of life.
Revenue
$10.7m
Assets
$14.6m
Employees
195
EIN
22-1532195
IRS type
501(c)(3)

The Hemophilia Alliance

The Hemophilia Alliance provides member Hemophilia Treatment Center with resources and services to sustain the Comprehensive Care Model for individuals with bleeding and clotting disorders.
Revenue
$8.9m
Assets
$21.6m
Employees
9
EIN
20-2529619
IRS type
501(c)(3)
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Methodology: Cause IQ mines all tax-exempt organizations that file a Form 990, Form 990-EZ, or Form 990-PF with the IRS. We collect and aggregate this information from OCR'd paper taxreturns, XML e-file taxreturns, IRS-provided extract, the Business Master File, and Cause IQ secret sauce for data cleaning, categorization, classification, analytics, etc.
This category corresponds to the "G20: Birth Defects and Genetic Diseases" National Taxonomy of Exempt Entities (NTEE) code. Cause IQ determines NTEEs for organizations by its own internally-developed secret-sauce algorithms.
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