An online library plus apps, interactive games, art, and music activities to support children’s emotional needs resulting from a parent’s military service, including homecoming, relocation, deployment, injuries and grief counseling.
Dedicated to delivering the highest quality of care to children with a host of orthopaedic and neuromusculoskeletal disorders and diseases, as well as cleft lip and palate.
Online resources relative to the concerns of siblings of all ages, youth to adulthood, including self-advocacy tools. Hosts a na- tional conference.
A program dedicated to supporting brothers and sisters of peo- ple with special health and developmental needs, featuring the SIBSHOPS trainings for local organizations.
Provides financial and emotional support to families burdened by pediatric brain tumors, increases awareness and provides financial support to St. Jude Hospital.
Dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.
A social support environment for professionals and families of individuals with Sotos Syndrome.
Goal to increase the use of “science that works” to support both professional and family caregivers offers online resources such as a comprehensive Caregiver Assessment tool.
Award-winning zoo, home to hundreds of fascinating species from around the world. Handicap accessible. Open every day, ex- cept Christmas.
Led by Boston Children’s Hospital, Safe Kids implements evi- dence- based programs such as car-seat checkups, safety work- shops and sports clinics, to help prevent childhood injuries.
Advocates for improved standards, laws, and programs related to childhood injury prevention. Website offers educational infor- mation about safe car and plane travel.
Sailing programs encourage people with disabilities to be active participants by steering the boat and trimming sails. Outcomes include increased self-confidence and improved leadership skills.
This national center, a component of the U.S. Public Health Ser- vice, provides a range of information on mental health, treatment and support services.
Maintains a registry of individuals affected by brain injury, for researchers delving into therapies and treatments. Their sister project site offers opportunities for youth to start a club at their own school to get the word out about TBI’s www.sarahjanebrain- club.tumblr.com.
Fosters ongoing research and educates and nurtures the community of those affected by scoliosis in areas such as early detection through screening programs, treatment methods, pain management and patient care.
Offers free and low-cost Braille books to individuals up to age 21. The Rose Project provides encyclopedia articles in braille for student’s projects and reports at no cost.
A collection of internet accessible information and resources for individuals in the fields related to special education.
A UK-based organization with insightful online resources, practi- cal guides for living with various medical needs, and informative online newsletters.
Provides information about rare genetic conditions, relevant research, genetic testing, services available, advocacy groups, and information cited in medical journal articles.
Provides information and parent-to-parent support around issues of gastro-esophageal reflux in children and teens. Hosts online newsletter, research news, and related articles.
Marketplace for refurbished medical and adaptive equipment.
Provides a list of Technology Assistance Projects nation-wide.
Provides information for families. They also have an online com- munity and regional contacts for additional support.
Goal is to support folks in their journey to live comfortably and safely in their homes without spending their life savings on modifications.
Focus is peer support, condition-specific health information, resources related to living with immune deficiency, college schol- arship program.
Relative to the 185+ conditions in this category, offers an array of materials, online resources, family networking through P2P, local networks, and a biennial national conference.
Dedicated to providing information to families, sponsoring research, and fostering partnerships to raise awareness. Hosts an active parent-to-parent network.
Dedicated to finding a cure and effective treatments for Progeria; offers information, resources, and support through their website and community activities.
Vital law enforcement tool that finds missing people with Alz- heimer’s, Autism, and related conditions and reunites them with their family members or caregivers.
A not-for-profit association of parents, educators, students and other citizens active in their schools and communities.
Dedicated to the needs of those born with an ano-rectal malfor- mation or colon disease and any of the associated diagnoses.
Trains dogs to become guide dogs, companion and therapy dogs for children with vision impairment.
A community of support and information; organizes an annual PVNH Disorder Awareness Day. PVNH is a rare neuronal migra- tion disorder.
Provides information and support, quarterly parent support groups, family events, conferences, parent sharing list of parents who can be contacted for support, and newsletter.
Provides organizations opportunities to learn about best practic- es, connect with others doing similar work, and receive training and technical assistance.
Can fund up to 25% maximum of $5,000-toward costs asso- ciated with vehicle conversion or a wheelchair lift. The online application process is opened quarterly.
Dedicated to raising awareness about the benefit of early detection and early therapy for children with physical movement differences; parent-answered toll-free line providing help.
Seeks to safeguard patients through effective mediation assur- ing access to care, maintenance of employment and preserva- tion of financial stability relative to their diagnosis of life-threat- ening or debilitating diseases.
Provides free health care advocacy services to patients with life- threatening and serious illness and their families.
Ensures that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical air transportation.
Offers support services and a comprehensive website with patient and public education, peer support through active discussion boards, and research and advocacy supports.
Provides support and resources for families and friends of gay, lesbian, bisexual, transgender and gender-expansive children, adolescents, and adults.
Provides information and emotional support to patients of all ages and their families and comprehensive downloadable, free resources. Patient-to-Patient Support Line: 1-800-748-7274
Offers high quality wooden adaptive equipment made with care.
Offers summer programs for children with disabilities, a three- day program for child and parent to explore augmentative communication and custom-made adaptive equipment.
Assists the families of children living with hepatitis, HIV/AIDS, or other chronic viral diseases by offering emotional, financial, and informational support.
May be able to help you get brand-name and generic medicines free or nearly free if you don’t have prescription coverage and can’t afford your medicines.
Online support and resources, including suggested reading, developmental milestones, and support network.
Supports research, education, awareness, and mutual support through local network groups, chatrooms, e-newsletter, and comprehensive Information Center on website.
Information education and outreach for families with children and adults dependent on home parental IV-and/or enteral tube- fed- nutrition. Also offer supports in Dutch.
Supports parents by providing them with current, reliable and practical information on a variety of parenting topics related to raising children from infancy through adolescence.
OptiNeeds provides free corrective eyewear to athletes with disabilities.
Committed to promoting access, quality and leadership in par- ent-to-parent support across the country.
Created by parents of children and youth with disabilities to help other parents and families facing similar challenges.
Raises awareness of PANDAS/PANS through a comprehensive website with an ongoing database, research, newsletters, and scientific advisory board; hosts support groups and conferences.
The central resource for Parent Training Information PTI-Centers and Community Parent Resource Centers (CPRCs).
Medical and support information and resources for families of children affected by Duchenne and Becker Muscular Dystrophy.
PATH Intl.’s mission is to change and enrich lives by promoting excellence in equine-assisted activities and therapies.
Raises public awareness and assists families who have children with Trisomy and related chromosome disorders. Fundraising events help to sponsor conferences and related activities.
Provides information for parents and an online discussion forum and helps families to network with each other.
