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)

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: 3/14/2023
Nationwide Provider
999 S Carterville Road
Orem, UT 84097
Nationwide Provider
Address:
999 S Carterville Road
Orem, UT 84097
Email: seasonatwater@gmail.com
Services Provided:

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: 3/3/2023
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:

Provides information about Fabry disease, research and clinical trials information, funding programs, and more. See Recommended Schedule of Assessment at https://www.fabrydisease.org/images/ReferencePDFs/fabry-registry-schedule-of-assessments.pdf. Programs, include:

  • Annual conference
  • Family camp
  • Personal support
  • Research and educational information
Source: MHP-Nationwide
Last Updated: 12/27/2022
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: 9/8/2022
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." Provides asthma research.

Source: Nationwide Suggest Providers Queue
Last Updated: 11/24/2022
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
593 West Roosevelt Road, Suite 1188
Glen Ellyn, IL 60137
Phone: 630-617-5079
Nationwide Provider
Address:
593 West Roosevelt Road, Suite 1188
Glen Ellyn, IL 60137
Phone: 630-617-5079
Fax: 630-563-9181
Email: info@american-hearing.org
Services Provided:

Funds research to understand hearing and balance functions, and educates people on how to prevent, identify, preserve, and restore these.

Source: MHP-Nationwide
Last Updated: 1/25/2023
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: info@oaanews.org
Services Provided:

Empowers families and health care professionals with knowledge in organic acidemia metabolic disorders. Supports 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: 2/14/2023
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