Community Based Organizations

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.

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

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

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.

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

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.

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

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

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.

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

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

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.

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

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

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.

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

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