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Genetic disorder and birth defect organizations

There are 1,426 genetic disorder organizations in the United States. Combined, these genetic disorder organizations employ 48,893 people, earn more than $5 billion in revenue each year, and have assets of $10 billion.
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Job trends for Genetic disorder organizations

Employees per organizationNumber of organizations
0
 
271
1-10
 
221
11-25
 
75
26-100
 
61
101 to 1,000
 
77
1,000+
 
10
Key takeaways for employment stats:

Sizes of genetic disorder organizations

Revenues per organizationNumber of organizations
< $250k
 
499
$250k to $1M
 
211
$1M to $5M
 
133
$5M to $25M
 
86
$25M to $100M
 
30
$100M+
 
6
Key takeaways for revenue stats:

Directory of genetic disorder organizations

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1-20 of 1,426

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
$50.7m
Assets
$72.3m
Employees
124
EIN
13-3223946
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
$19.7m
Assets
$30.7m
Employees
55
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
$4.7m
Assets
$12.4m
Employees
37
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
$2.8m
Assets
$6.4m
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
$355.8m
Assets
$5.0b
Employees
875
EIN
13-1930701
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
$10.6m
Assets
$16.4m
Employees
161
EIN
20-1560679
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
$63.4m
Assets
$42.4m
Employees
724
EIN
36-2894174
IRS type
501(c)(3)

CEREBRAL Palsy 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
$46.1m
Assets
$30.0m
Employees
990
EIN
11-1723782
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
$29.9m
Assets
$34.0m
Employees
614
EIN
52-0696384
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
$11.1m
Assets
$5.7m
Employees
75
EIN
13-3409801
IRS type
501(c)(3)

Hope House for the 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
$13.8m
Assets
$6.3m
Employees
251
EIN
95-2287909
IRS type
501(c)(3)

The Pulmonary Hypertension Association

To find ways to prevent and cure Pulmonary Hypertension and to provide hope for The Pulmonary Hypertension community through support, education, advocacy, and awareness.
Revenue
$8.5m
Assets
$24.7m
Employees
0
EIN
65-0880021
IRS type
501(c)(3)

Foundation for Angelman Syndrome Therapeutics

Foundation for Angelman Syndrome Therapeutics accelerates cures for Angelman syndrome by funding aggressive research, shaping the therapeutic agenda, and supporting families through education and advocacy.
Revenue
$5.4m
Assets
$44.9m
Employees
11
EIN
26-3160079
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
$6.2m
Assets
$8.9m
Employees
13
EIN
31-1763110
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
$34.7m
Assets
$97.0m
Employees
89
EIN
58-1175625
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
$36.9m
Assets
$30.5m
Employees
593
EIN
21-0674715
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
$10.9m
Assets
$26.0m
Employees
13
EIN
20-2529619
IRS type
501(c)(3)

New Jersey Institute for Disabilities

New Jersey Institute for Disabilities, Inc. is a regional multi-service agency for infants, children and adults with Disabilities providing early intervention services; special education; developmental therapy, nursing and medical services; adult day prog....
Revenue
$51.3m
Assets
$26.4m
Employees
659
EIN
22-1554528
IRS type
501(c)(3)

Queens Centers for PROGRESS (QCP)

Queens Centers for Progress is committed to providing person-centered services and supports to children and adults who have developmental disabilities.
Revenue
$38.5m
Assets
$23.1m
Employees
596
EIN
11-1665821
IRS type
501(c)(3)

United Cerebral Palsy of Georgia (UCP)

United Cerebral Palsy of Georgia was founded in 1965 by a group of concerned citizens seeking to establish community based supports to address the needs of children and adults with cerebral palsy.
Revenue
$45.8m
Assets
$34.5m
Employees
644
EIN
58-0976462
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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