Disability Awareness Programs

A national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Key issue is affordable, accessible, integrated housing. Access Across America is a proposal to HUD for a national program.

Offers a directory of Local ADAPT Groups.

The ANCOR Foundation is a 501(c)3 organization created to support the development of innovative programs and disseminate information that will improve the quality of life for people with disabilities.

Programs include:

• Included. Supported. Empowered.: Three-year campaign to celebrate the successes of people with intellectual and developmental disabilities and the providers who support them through storytelling.
• Case for Inclusion: A tool (published annually) evaluating all 50 states and DC on how well state programs are serving individuals with I/DD. In partnership with United Cerebral Palsy.
• Leadership Academy: Immersive two-year program for mid-career professionals working as I/DD service providers.

AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

Non-medical information on blindness, and referrals to various sources of help, state services for the blind, and state libraries for the blind.

Resources: Offers a variety of resources, including Job Connection, Blind/Low Vision resources, peer support, and more

Scholarships: Scholarships for freshman, undergraduate, and graduate students. To be eligible for a scholarship, applicants need to be legally blind, maintain a 3.0 GPA to be eligible for most scholarships, be a full-time student (as well as students who work 32 or more hours per week and attend college part time), and be involved in their school/local community.

Programs and Services: Audio Description Project, Advocacy and Governmental Affairs, Radio, and more.

The Association for Creatine Deficiencies’ mission is to provide patient, family, and public education, to advocate for early diagnoses, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Offers information for patients and families, including online support groups, for clinicians, and about research.

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

Offers the Big Red Safety Box for families. Also offers downloadable digital safety toolkits:

• Caregiver Toolkit
• First Responder Toolkit
• Teacher Toolkit

Offers a variety of resources for different audiences. These include Where to find swimming lessons; accidental drowning accounts for approximately 90% of lethal wandering outcomes.

Wandering defined: Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. Wandering dangers include Drowning; Exposure; Dehydration; Hypothermia; Traffic Injuries; Falls; Physical Restraint; Encounters with strangers; Encounters with law enforcement.

The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration is a working group of six national non-profit autism organizations whose mission is to prevent autism-related wandering incidents and deaths.

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.

Connecting Families UCD Foundation provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Connecting Families UCD Foundation hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

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.

Resources, information, research information, and support for HCU.

Information about PKU, research, advocacy, and resources.

Find a Clinic by state, zip code, or map.

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.

Resources and support for individuals with limb loss and their families. Advocacy information and resources for state and national advocacy.

Paddy Rossbach Youth Camp: A 6-day traditional summer camp experience for children with limb loss and limb difference to increase self-confidence and self-esteem through a traditional and supportive summer camp experience. The Amputee Coalition arranges travel plans for all camp attendees. Cost: none! thanks to sponsors and donors. Opportunities for camp counselors ages 18-19 and age 20 and above.

2016 dates July 8 - 16.