Provides the XP family with support, advocacy, information and protection while promoting research. (Offers a summer camp for XP families Camp Sundown).
Provides intensive in-home, residential and transitional services in various locations across the state.
Supports research and the development of the most up-to-date educational materials regarding Williams syndrome.
An organization of parents and professionals who advocate on behalf of children with mental, emotional or behavioral specials needs.
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 resources specific to the region. They also host fundrais- ing events allowing families to connect with each other.
Offers medical information, patient information, and family support for individuals affected by Von Hippel-Lindau Disease.
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.
Immediate educational, emotional and financial support to fam- ilies with a diagnosis of Twin-to-Twin Transfusion Syndrome.
A forum where those affected by the disease can work together with medical professionals to better understand the condition.
A UCP initiative for children and youth with disabilities and chronic illnesses, providing an online social networking commu- nity, and information on conditions and diagnoses.
Offers an information and referral service, legislative advocacy, technology initiatives and research programs to consumers and families of children with Cerebral Palsy.
Agency ser- vices to families with special needs, including information and referral, financial assistance, PCAs,support groups, residential and day supports for adults.
Offers assistance with general and educational advocacy, as- sistive technology, computer training, and a loaner program of durable medical equipment.
Provides patients and family with information about diseases and identifying resources at the same time that promotes educa- tion and research about Leukodystrophy.
Promotes research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to af- fected individuals and families.
Offers support, advice and information on the challenges that families face when there is no diagnosis.
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.
Committed to improving the quality of life for children with sen- sory processing disorder in the home, classroom and community.
Educational programming, online training, and local chapters to prevent brain, spinal cord, and other traumatic injuries.
Supported living options for young adults with special needs. Services include respite/family support, PCA, children’s intensive supports and information and referral. TILL Autism Support Center, Phone: 781-302-4835
A challenging curriculum of academic excellence for deaf stu- dents from infancy through high school.
Information and referrals, adult and parent support groups, kids group, lending library, advocacy services, newsletter, and physi- cian referral service.
Online support to assure quality home care for children with tracheostomies and facilitate parent-to-parent support.
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.
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.
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 pro- grams.
Dedicated to finding a cure for Tuberous Sclerosis while improv- ing the lives of those affected; offers information and resources with online support and in-person support groups.
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.
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.
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.
Dedicated to prevention, diagnosis and treatment to save lives from stroke, helps people better understand and avoid stroke, guides healthcare professionals and provides information to enhance the quality of life for stroke survivors.
Support and opportunities to individuals and providers im- pacted 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.
Provides information and resources for families in need of a speech & language pathologist with expertise in dysphagia or swallowing disorders.
Dedicated to educating, 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.
Maintains the national temporal bone registry, offers activities in the field of human temporal bone and auditory brain stem study; and provides updates on temporal bone donation or research.
The SPD Foundation is a world leader in research, education and advocacy for Sensory Processing Disorder.
Information, support networks, and resource center for individu- als with spinal cord injury and their families.
Support, training, and resources to assist organizations and indi- viduals to develop suicide prevention programs, and to advance the National Strategy for Suicide Prevention.
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 resourc- es, and promotes hearing health awareness while supporting research and education.
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.
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.
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.
Provides a range of support services, including New Parent resource packet, family activities, support groups, clothing and equipment sharing program, and health guide.
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 parent-led sensory gym giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.
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.
A unique federation of more than 140 nonprofit voluntary health organizations serving people with rare disorders and disabilities. Offers Patient Assistance and Patient Organization resources.
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.
Provides information for families. They also have an online com- munity and regional contacts for additional support.
