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.

• Specialized Information and Referral
• Disease/Disability Information
• Internet Information Resources
• Research Funds
• Health/Disability Related Support Groups

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

Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Spanish-language line: 866-748-8008

The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

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.

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.

• Internet Information Resources
• Disease/Disability Information
• Specialized Information and Referral

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.

• Specialized Information and Referral
• Clinical Trials
• Disease/Disability Information

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.

• Disease/Disability Information
• Internet Information Resources
• Specialized Information and Referral

• Medical Care Expense Assistance
• Internet Information Resources
• Disease/Disability Information

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.

Provides the latest autism science and information, funding research into the causes, prevention, treatments and cures for autism, awareness of autism spectrum disorders, advocacy for the needs of individuals with autism and their families and an online store.

• Specialized Information and Referral
• Disease/Disability Information

• Disease/Disability Information
• Specialized Information and Referral
• Internet Information Resources

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

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 PKU, research, advocacy, and resources.

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

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

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

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

A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.

Additional Family Resources: Medical Cards, Family Map, CoRDS Registry, CdLS Discussion Board

M - F 8:30 - 5 ET

Provides a comprehensive resource for accurate, up-to-date information, support, and acceptance to maximize the quality of life for individuals with 5p- and their families. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children. Also supports five Regional Family Get-Togethers per year.

• Disease/Disability Information
• Health/Disability Related Support Groups

• Health/Disability Related Support Groups
• Disease/Disability Information
• Medical Care Expense Assistance

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.

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.

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.