Provides listing of clinical trials including Angelman syndrome; anxiety in children; argininosuccinic aciduria; arginase; auditory brinstem implants in children and adolescents, biotinidase deficiency in children and adolescents, brain injuries in children; cerebral palsy; continuous positive airway pressure (CPAP); celiac disease in children; childhood absence epilepsy; childhood absence epilepsy initial treatment; childhood hearing loss; childhood adolescent miagraine prevention study (CHAMP); children and adolescents with MPS I; children with Tourette syndrome; postural orthostatic tachycardia syndrome (POTS); 22q11.2 deletion syndrome; hearing aids in children, migraine in children; positive airway pressure (PAP) in children; vilazodone in adolescents; levomilnacipran in adolescents; preterm infants; attention deficit hyperactivity disorder (ADHD); BH4/tetrahydrobiopterin; Charcot-Marie-Tooth; children with asthma; congenital hypothyroidism; Duchenne muscular dystrohies (DMD); Fabray; intellectual disabilities; myotonic type 1; neurofibromatosis (NF1); Pompe disease; and short-chain acyl-CoA dehydrogenase deficiency (SCHAD); tracheostomies; hyperphagia in Prader-Wili; XXY (Klinefelter); GERD; TBI; substance abuse; cochlear implants; congenital adrenal hyperplasia; congenital heart disease; cystic fibrosis; depression; MOMS trial for NTD; e-cigarettes; epilepsy; FASD; foster care; fragile X; headache; social determinants of health; infantile spasms; inflammatory bowel disease; ketogenic diet; LCHAD/TFP deficiency; leukodystrophy; MCADD; malonic aciduria; maple syrup urine disease; maternal depression; methylmalonic acidemia; ARPKD/CHF; open/aftercare treatment for participants diagnosed with obsessive-complusive disorder; osteogenesis imperfecta; osteoporosis; otitis media with effusion; PaP; PKU; patient-specific, effective, and rational functional connnectivity trgeting for DBS in OCD; constipation; obesity; Prader-Willi syndrome; predicting treatment response in patients wtih OCD; propionic acidemia; reclaim deep brain stimulation (DBS) therapy for obsessive-compulsive disorder; Rett syndrome; seizures; SCID: sickle cell disease; smoking cessation; somatic symptom and related disorders; spina bifida; spinal cord injuries; spinal muscular atrophy; autism; complementary and alternative medicine; glactosemia; integrative health; pyruvate decarboxylase deficiency; syncope; thin film spectacle coatings to reduce light sensitivity and headaches in child and adolescent patients with migraine; transgender youth; treatment of CMV-related hearing loss; tuberous sclerosis; turner syndrome; type 1 diabetes; tyrosinemia type 1; understanding how ketamine brings about rapid improvement in OCD; very long chain acyl-CoA dehydrogenase deficiency (VLCADD); and others. Type in the term on the home page under "Find a study."

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director

Conducts research on spinal muscular atrophy (SMA).

Funds research, runs scientific meetings, advises pharmaceutical companies, and provides education. Families can reach out to FRAXA for resources, guidance, referrals, and an international community of support.

Provides programs, services, and resources to defend the rights of blind Americans, provides information and support to blind children and adults, and builds community.

Provides educational resources and continuing education courses for occupational therapy, physical therapy and speech-language pathology professionals who incorporate equines, equine movement and the equine environment in treatment. 

Accredits centers and certifies professionals in the equine-assisted services industry. Provides over 150 standards to help centers sustain viable programs using best business practices, provide compassionate, humane equine management, program- specific standards, facility maintenance and precautions and contraindications for disabilities.

Any child between the ages of 5 and 17 with any disability may participate.

Provides fishing outings for children with special health care needs.

• Disability Related Sports

Provides a registry to match individuals with Fragile X to studies. Provides database of people who want to be notified about fragile X research studies. It is a free, confidential, convenient way for families to connect with studies and move research forward.

Provides a shared research infrastructure supports collection and analysis of robust clinical data and biological specimen to pave the way for transformative therapeutic trials across the leukodystrophies.

Accelerates research in myotonic dystrophy and FSH dystrophy by connecting patients with researchers, collecting longitudinal data to track disease progression, and disseminating information to families, researchers, and care providers.

Provides electronic databases which collect, maintain, and disseminate controlled substance prescription information specific to each jurisdiction's laws and regulations.

Provides a place for patients with rare diseases, such as Rett syndrome, MECP2 duplication, Rett-related disorders, and urea cycle disorders. Individuals can register and be contacted about clinical research opportunities and updates on the progress of research projects. The registry is anonymous and free of charge.

Provides research studies for type 1 diabetes.

A collaborative network of nonprofits, corporations, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community.  They work together around the interests of: Advocacy, Awareness, Research & Treatment, Family Support, and Survivorship.

The Hope Portal is a searchable database which connects childhood cancer families to the information and vast array of support resources

A downloadable video resource for people with Cerebral Palsy and their families. Free service. Allows viewers to create an individualized playlist of CP video materials. Covers topics such as Intervention & Therapy, Communication, Family Dynamics, Building Independence, School & Work, and includes CP advocates such as Comedian Zach Anner, Comedian Maysoon Zayid, Actor Micah Fowler, and Sports Announcer Jason Benetti. Provided by the Cerebral Palsy Foundation.

Online application required.

Provides custom service dogs to children with special needs across the US.