Provides intensive in-home, residential and transitional services in various locations across the state.
Online database of articles written by parents of young children with visual impairments or multiple disabilities, as well as links to resources and ways to connect with other families.
Provides the XP family with support, advocacy, information and protection while promoting research. (Offers a summer camp for XP families Camp Sundown).
Supports research and the development of the most up-to-date educational materials regarding Williams syndrome.
Website offers a comprehensive collection of Stories of Hope, patient resources, information about each step in the Transplant process, and links to support groups across the country.
Offers medical information, patient information, and family support for individuals affected by Von Hippel-Lindau Disease.
Promotes research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
Focuses on improving the quality of life for people living with spinal cord injuries and disorders. Services include a newsletter, peer support, and accessibility consultations.
Educational programming, online training, and local chapters to prevent brain, spinal cord, and other traumatic injuries.
Serving families with children diagnosed with cancer through financial grants. Can be used for medical expenses, items for the child with cancer or personal expenses such as rent and utility payments.
Information and referrals, adult and parent support groups, kids group, lending library, advocacy services, newsletter, and physician referral service.
Provides residential, clinial, family support services, day/vocational and social rograms to meet the needs of individuals of all ages with autism spectrum disorder, developmental disabilites, aquired brain injuries, mental health issues, and other specialized needs.
On-line resources for families and professionals, research, advo- cacy, educational info, photos, and volunteer opportunities.
Services include counseling, play therapy, cognitive- behavioral therapy; parent and school consultations, and summer programs.
Dedicated to finding a cure for Tuberous Sclerosis while improving the lives of those affected; offers information and resources with online support and in-person support groups.
A forum where those affected by the disease can work together with medical professionals to better understand the condition.
Immediate educational, emotional and financial support to families with a diagnosis of Twin-to-Twin Transfusion Syndrome.
Offers an information and referral service, legislative advocacy, technology initiatives and research programs to consumers and families of children with Cerebral Palsy.
Offers assistance with general and educational advocacy, assistive technology, computer training, and a loaner program of durable medical equipment.
Agency services to families with special needs, including information and referral, financial assistance, PCAs,support groups, residential and day supports for adults.
Provides patients and family with information about diseases and identifying resources at the same time that promotes educa- tion and research about Leukodystrophy.
Education and support services for families of children with a wide variety of disorders that affect a child’s growth.
Families who have a child that has been inpatient for 30 days within a month may apply for $300 to pay for expenses including rent, mortgage, utilities, childcare, prescriptions, etc.
Families who have a child with cancer may apply for financial assistance to help pay for mileage, airfare and lodging when their child needs to stay near the hospital for treatment.
Provides recreation and rehabilitation programs including physical therapy, occupational therapy, therapeutic riding, swim and aquatics, speech therapy, early intervention, day care, and Personal Care Attendants.
An organization of parents and professionals who advocate on behalf of children with mental, emotional or behavioral specials needs.
Offers workshops, educational, equipment, and financial resources to families of children with hearing loss. Provides spe- cialized early intervention services.
Provides financial and emotional support to families of children with cancer up to age 18.
Promotes advocacy skills for individuals and families, provides training and consultation to Autism professionals and parents in China and those planning to work in China.
A challenging curriculum of academic excellence for deaf stu- dents from infancy through high school.
Support and opportunities to individuals and providers impacted by a port wine birthmark and related conditions such as Sturge-Weber syndrome and Klippel-Trenaunay.
Online resources, services and support to those who stutter and their families, as well as support for research into the causes of stuttering and training programs for professionals.
Support, training, and resources to assist organizations and indi- viduals to develop suicide prevention programs, and to advance the National Strategy for Suicide Prevention.
Grassrooys movement connecting, supporting, educating, and mobilizing COVID-19 survivors to support all medical, scientific, and academic research.
Offers support, advice and information on the challenges that families face when there is no diagnosis.
Dedicated to educationg, empowering and supporting families affected by autism.
Gives children living with Cystic Fibrosis and their family the oppor- tunity to “take a breather” from everyday emotional, financial, and spiritual stresses caused by their disease. Creating smiles, laughter, and magical memories is our goal.
Dedicated to improve the level of understanding, diagnosis and treatment of Tarlov cysts.
Team IMPACT tackles the emotional trauma and social isolation experienced by children facing serious and chronic illnesses by matching them with a college athletic team. Through a two-year therapeutic program hat complements their medical treatment, children develop relationships and skills that help complete the full circle of healing.
Technical assistance on behavior and social/emotional issues to caregivers, service providers, families, and administrators; train- ings, workshops, seminars, newsletter, parent resources.
Provides information specific to the diagnosis, financial supports, and advocacy efforts for those affected by insect-borne diseases; also hosts monthly support group in Sturbridge.
Provides a range of support services, including New Parent resource packet, family activities, support groups, clothing and equipment sharing program, and health guide.
Committed to improving the quality of life for children with sen- sory processing disorder in the home, classroom and community.
This initiative is spearheaded by the Association for Behavioral Health and Wellness (ABHW), to reduce the stigma surrounding mental illness and substance use disorders.
Provides hearing aids to people with limited financial resources; promotes hearing health awareness, research and education.
Provides financial and emotional support to families burdened by pediatric brain tumors, increases awareness and provides financial support to St. Jude Hospital.
Support organization for Trisomy 18, 13, and related disorders; offers support for parents who have children with chromosome disorder and education to families and professionals.
A social support environment for professionals and families of individuals with Sotos Syndrome.
Offering full-and half-day ABA programming for toddlers and preschoolers diagnosed with Autism Spectrum Disorder.
Boston Medical Center oversees this therapeutic, medically-specialized program for children of all ages.
Supports for people with Scleroderma, Raynauds, Sjogren’s Syndrome, Systematic Sclerosis and their families and friends, including emotional support, education, and research.
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.
The SPD Foundation is a world leader in research, education and advocacy for Sensory Processing Disorder.
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.sarahjanebrainclub.tumblr.com.
Parent volunteers will call and provide information and support to families.
REV Accessibility is a 501 (c)3 non-profit organization that has supported non-traditional communication since 2017. Its focus is to provide access to higher education for students who spell, point, or type for communication.
Provides paid summer part-time work experience for visually impaired students ages 16-20.
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.