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Genetic disorder and birth defect organizations

There are 1,356 genetic disorder organizations in the United States. Combined, these genetic disorder organizations employ 31,056 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
 
256
1-10
 
211
11-25
 
73
26-100
 
57
101 to 1,000
 
61
1,000+
 
5
Key takeaways for employment stats:

Sizes of genetic disorder organizations

Revenues per organizationNumber of organizations
< $250k
 
458
$250k to $1M
 
200
$1M to $5M
 
130
$5M to $25M
 
73
$25M to $100M
 
21
$100M+
 
3
Key takeaways for revenue stats:

Directory of genetic disorder organizations

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1-20 of 1,356

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
$34.6m
Assets
$66.9m
Employees
116
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)

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
$3.6m
Assets
$7.6m
Employees
11
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)

Cerebral Palsy Transport

To provide motor vehicle transportation to persons with disabilities served by United Cerebral Palsy Association of New York state.
Revenue
$7.9m
Assets
$6.1m
Employees
88
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)

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
$30.8m
Assets
$22.3m
Employees
33
EIN
84-3288113
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
$31.3m
Assets
$37.0m
Employees
559
EIN
52-0696384
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
$53.8m
Assets
$121.1m
Employees
90
EIN
58-1175625
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)

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)

Open Arms Perinatal Services

Open Arms provides community-based support during pregnancy, birth, and early parenting to nurture strong foundations that last a lifetime.
Revenue
$5.5m
Assets
$4.4m
Employees
39
EIN
91-1868021
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
$11.9m
Assets
$15.0m
Employees
189
EIN
22-1532195
IRS type
501(c)(3)

National Ataxia Foundation Incorporated

National Ataxia Foundation Incorporated advances treatment development, supports families affected by Ataxia, and fosters research collaborations to eliminate the condition.
Revenue
$13.0m
Assets
$11.9m
Employees
23
EIN
41-0832903
IRS type
501(c)(3)

United Cerebral Palsy of Hudson County

United Cerebral Palsy of Hudson County's mission is to provide the developmentally disabled with a comprehensive array of habilitative and support services that allow each individual to function in the least restrictive environment.
Revenue
$5.0m
Assets
$3.6m
Employees
65
EIN
22-1599183
IRS type
501(c)(3)

Charcot-Marie-Tooth Association (CMTA)

The mission of Charcot-Marie-Tooth Association is to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure.
Revenue
$6.9m
Assets
$8.1m
Employees
14
EIN
22-2480896
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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