Community Based Organizations

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Organizations whose members have joined together on a voluntary basis to promote a particular cause or work for the realization of a specific social or political goal. (AIRS TD Community Action/Social Advocacy Groups)

Service Legend
Local Service
Statewide Service: Provides online resources, telehealth, or service at a satellite office.
Nationwide Service: Provides online resources, telehealth or services at a regional/national headquarters location.
1203 Highway 2 W, Ste. 35
Kalispell, MT 59901
Phone: 406-257-0048
Address:
1203 Highway 2 W, Ste. 35
Kalispell, MT 59901
Phone: 406-257-0048
Toll Free Phone: 800-995-0029
Wheelchair Access: Yes
Languages Spoken: English, Russian, and Sign Language interpreters available
Eligibility:

Individuals of all ages with all types of disabilities are eligible for Summit services.

Services Provided:

Summit Independent Living Center, Inc. is a private, non-residential non-profit organization that offers a wide range of services designed to give people with disabilities the tools and resources that are needed to improve independence, self-confidence, knowledge, skills, and access to community resources. Five core service areas include:
Information and Referrals
Advocacy
Peer Advocacy
Skills Training
Transition Services
Skills Training

Source: Montana Children's Special Health Services
Last Updated: 3/1/2022
Nationwide Provider
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Nationwide Provider
Address:
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Fax: 202-966-8553
Services Provided:

Mission: Genetic Alliance engages individuals, families, and communities to transform health.

Active Programs:

  • Advocacy-Led Research: Research tools for individuals and communities
  • Expecting Health: Assistance for all stages of family planning, including preconception and advocacy
  • Stakeholder Engagement: Facilitates communication across multidisciplinary stakeholders.
Provider Profiles:

Genetic Alliance was incorporated on October 31, 1986 as the Alliance of Genetic Support Groups. AGSG changed its name to Genetic Alliance in 2000.

Source: MHP-Nationwide
Last Updated: 6/8/2020
Nationwide Provider
161 North Clark Street Ste 3550
Chicago, IL 60601
Nationwide Provider
Address:
161 North Clark Street Ste 3550
Chicago, IL 60601
Toll Free Phone: 800-572-1717
Email: mda@mdausa.org
Services Provided:

A voluntary health agency that works to combat muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related muscle-debilitating diseases. The organization is committed to finding treatments and cures while providing a comprehensive program to empower families with support to help them thrive and stay independent including summer camps for kids, peer support, equipment resources and more. Related volunteer opportunities available.COVID-19 Update: following all CDC and state guidelines.

  • Voluntary Health Organizations
  • Assistive Technology Expense Assistance
  • Health/Disabilities Related Volunteer Opportunities
  • Therapeutic Camps
  • Health/Disability Related Support Groups
Source: MHP-Nationwide
Last Updated: 4/22/2022
Nationwide Provider
UT
Nationwide Provider
Address:
UT
Email: childgenetics@gmail.com
Services Provided:

Aware of Angels is a nonprofit photography project that advocates for children who have genetic, rare or undiagnosed disorders with a photography and blog project. AOA brings awareness to and shares stories and images of children with genetic disorders and those needing a diagnosis.

Source: MHP-Nationwide
Last Updated: 6/22/2020
Nationwide Provider
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Nationwide Provider
Address:
4301 Connecticut Ave. N.W., Suite 404
Washington, DC 20008
Phone: 800-651-9131
Email: info@fabrydisease.org
Services Provided:

Information about Fabry disease, research and clinical trials information, funding programs, and more. Programs, include:

  • Annual conference
  • Family camp
  • Personal support
  • Research and educational information
Source: MHP-Nationwide
Last Updated: 8/13/2020
Nationwide Provider
611 Rockville Pike, Suite 150
Rockville, MD 20852
Phone: 204-246-7140
Nationwide Provider
Address:
611 Rockville Pike, Suite 150
Rockville, MD 20852
Phone: 204-246-7140
Email: info@madisonhouseautism.org
Eligibility:

Autism

Services Provided:

Advocates for adults with autism and their families. Helps those with autism make choices, live more independently, hold jobs, feel connected to their communities, and become participating members of society.

Source: MHP-Nationwide
Last Updated: 8/10/2021
Nationwide Provider
8 East 41st Street, 8th Floor
New York, NY 10017
Nationwide Provider
Address:
8 East 41st Street, 8th Floor
New York, NY 10017
Toll Free Phone: 800-221-4602
Fax: 646-870-9320
Email: info@ndss.org
Services Provided:

A national advocacy and public policy center for individuals with down syndrome. Has more than 300 local organizations that serve the Down Syndrome community.

Services Include:

  • New parent support and education
  • Family meetings, sibling and grandparent support
  • Recreational activities
  • Lending libraries
  • Helplines
  • Regional conferences
  • Partnerships with Down syndrome clinics
  • Training for medical professionals and educators
  • Advocacy
  • Buddy Walks
Source: MHP-Nationwide
Last Updated: 3/2/2022
Nationwide Provider
PO Box 1667
Sands Point, NY 11050-1299
Phone: 800-255-0411
Nationwide Provider
Address:
PO Box 1667
Sands Point, NY 11050-1299
Phone: 800-255-0411
Fax: 516-883-9060
Eligibility:

Contact for specific information.

Services Provided:

Advocates for all persons who are deaf-blind of any chronological age and cognitive ability.

Services Include:

  • Advocates
  • Fosters family-to-family relationships
  • Promote partnerships
  • Provides information and resources
  • Offers training opportunities
  • Promotes Deaf-Blind awareness
  • Builds family leaders

Source: Nationwide Suggest Providers Queue
Last Updated: 3/2/2022
Nationwide Provider
1825 K Street NW, Suite 600
Washington, DC 20006
Phone: 202-776-0406
Nationwide Provider
Address:
1825 K Street NW, Suite 600
Washington, DC 20006
Phone: 202-776-0406
Toll Free Phone: 800-872-5827
Fax: 202-776-0414
Email: info@ucp.org
Services Provided:

UCP and its 64 affiliates have a mission to advance the independence, productivity and full citizenship of people with a broad range of disabilities by providing services and support to more than 176,000 children and adults every day. UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams.

Source: Nationwide Suggest Providers Queue
Last Updated: 4/26/2022
Nationwide Provider
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Nationwide Provider
Address:
55 West Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 212-315-8700
Toll Free Phone: 800-586-4872
Services Provided:

Improving lung health and preventing lung disease through Education, Advocacy and Research. With the generous support of the public, we are "Fighting for Air."

Source: Nationwide Suggest Providers Queue
Last Updated: 10/28/2020
Nationwide Provider
PO Box 498
Kensington, MD 20895
Phone: 301-962-3520
Nationwide Provider
Address:
PO Box 498
Kensington, MD 20895
Phone: 301-962-3520
Toll Free Phone: 855-858-2226
Fax: 301-962-3521
Services Provided:

Provides community support, information, and advocacy to advocacy to families, survivors, and friends who have been affected by childhood and adolescent cancer.


Source: Nationwide Suggest Providers Queue
Last Updated: 4/14/2022
Nationwide Provider
3817 Tuesday Way
Louisville, KY 40219
Phone: 502-905-0869
Nationwide Provider
Address:
3817 Tuesday Way
Louisville, KY 40219
Phone: 502-905-0869
Toll Free Phone: 800-733-2258
Email: cclvipresident@cclvi.org
Services Provided:

Provide support, resources, education, and advocacy for those who are impacted by low vision and visual impairment.

Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
Nationwide Provider
275 N York St, Suite 201
Elmhurst, IL 60126
Phone: 630-617-5079
Nationwide Provider
Address:
275 N York St, Suite 201
Elmhurst, IL 60126
Phone: 630-617-5079
Fax: 630-563-9181
Email: info@american-hearing.org
Services Provided: Research funding and educational information about hearing disorders, including Tinnitus and Meniere's Disease.
Source: Nationwide Suggest Providers Queue
Last Updated: 1/17/2020
Nationwide Provider
9040 Duluth Street
Golden Valley, MN 55427
Phone: 763-559-1797
Nationwide Provider
Address:
9040 Duluth Street
Golden Valley, MN 55427
Phone: 763-559-1797
Fax: 866-539-4060
Email: mkstagni@gmail.com
Services Provided:

Volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. Support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

Source: MHP-Nationwide
Last Updated: 8/19/2020
Nationwide Provider
475 Riverside Drive, Suite 1400
610 West 112th Street New York, NY 10025
New York, NY 10115
Phone: 646-284-9600
Nationwide Provider
Organization Name: Bank Street Graduate School of Education
(Show others in Organization)
Address:
475 Riverside Drive, Suite 1400
610 West 112th Street New York, NY 10025
New York, NY 10115
Phone: 646-284-9600
Fax: 646-284-9623
Email: info@nccp.org
Eligibility: None.
Services Provided:

The National Center for Children in Poverty (NCCP) is the nation's leading public policy center dedicated to promoting the economic security, health, and well-being of America's low-income families and children. NCCP has a list online of publications on the following topics:

  • Child Poverty
  • Children’s Mental Health
  • Early Care and Learning
  • Healthy Development
  • Immigrant Families
  • Infants and Toddlers
  • Integrated Systems
  • Low-Wage Work
  • Social Security
  • Welfare
  • Work Supports
Source: Nationwide Suggest Providers Queue
Last Updated: 9/18/2020
Nationwide Provider
4182 Adams Ave
San Diego, CA 92116
Phone: 833-281-7165
Nationwide Provider
Address:
4182 Adams Ave
San Diego, CA 92116
Phone: 833-281-7165
Toll Free Phone: 833-281-7165
Email: info@autism.org
Services Provided:

The Autism Research Institute (ARI) is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also disseminates research findings to parents and others worldwide seeking help. The ARI data bank, the world's largest, contains over 40,000 detailed case histories of autistic children from over 60 countries.

Services:

  • Online educational events for parents and caretakers
  • Continuing medical education credit for physicians, teachers, dietitians, and occupational therapists
  • ATEC treatment assessment tool for individuals with Autism Spectrum Disorder
  • Resource Line
  • Research updates and newsletters
Source: Nationwide Suggest Providers Queue
Last Updated: 9/4/2020
United Way View on Map
Nationwide Provider
701 North Fairfax St
Alexandria, VA 22314
Phone: 703-836-7112
Nationwide Provider
Address:
701 North Fairfax St
Alexandria, VA 22314
Phone: 703-836-7112
Eligibility:

Contact for specific information.

Services Provided:

The mission of United Way is to improve people's lives by mobilizing the caring power of communities.

United Ways across the country activate community resources to make the greatest possible human impact. The United Way system includes approximately 1,400 community-based United Way organizations. Each is independent, separately incorporated and governed by local volunteers.

As community leaders, United Ways address the most critical local issues and mobilize resources beyond the dollars that are pledged through their fund-raising efforts. Community partners often include schools, government policy makers, businesses, organized labor, financial institutions, voluntary and neighborhood associations, community development corporations and the faith community.

Source: Nationwide Suggest Providers Queue
Last Updated: 3/1/2022
Nationwide Provider
120-34 Queens Blvd #320
Kew Gardens, NY 11415
Phone: 718-803-3782
Nationwide Provider
Address:
120-34 Queens Blvd #320
Kew Gardens, NY 11415
Phone: 718-803-3782
Toll Free Phone: 800-962-9629
Fax: 718-803-0414
Email: askus@unitedspinal.org
Eligibility:

Membership is free and open to all individuals who are living with a spinal cord injury or disease, their family members, friends, and healthcare providers.

Services Provided:

United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals. Offers options to request assistance, connect with a mentor, connect with a chapter, advocacy, and product and service information.

Spinal Cord Resource Center: Submit questions on any aspect of Spinal Cord Injury/Disease or get information and resources that may help you resolve a situation including local support.

Disability Products & Services Guide: Search the United Spinal Association Disability Products & Services Directory to discover providers and organizations that specialize in optimizing the health, independence and quality of life of people with a spinal cord injury or disease.

  • Health/Disability Related Support Groups
  • Information and Referral
  • Legislative Advocacy
  • Self Advocacy Support
Source: Nationwide Suggest Providers Queue
Last Updated: 3/1/2022
Nationwide Provider
PO Box 26853
San Jose, CA 95159-6853
Nationwide Provider
Address:
PO Box 26853
San Jose, CA 95159-6853
Email: info@ncsautism.org
Services Provided:

Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.

Offers:

  • Education to the public
  • Platform for policy discourse and services
  • Education for policy makers
  • Promote research
  • Promote awareness and acceptance
Source: MHP-Nationwide
Last Updated: 10/13/2020