Medically Related Resources
Resources for Genetic Disorders
The Genetic and Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
National Human Genome Research Institute
Genetic, Rare and Orphan Disease Resources Online
Global Genes
An organization that helps patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, stand up, stand out and become effective advocates on their own behalf.
Genetic Alliance
Genetic Alliance is a nonprofit organization that advocates for health benefits in the accelerating field of genomic research
Chromosome Disorder Outreach – National Organization for Rare Disorders (NORD)
It is a non-profit organization that provides support and information to anyone diagnosed with a rare chromosome change, rearrangement, or disorder. It promotes research and positive community understanding of all chromosome disorders.
Unique is a small charity supporting, informing, and networking with families living with a rare chromosome disorder.
Disorder Specific Resources
National Down Syndrome Society
NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy, and Community Engagement. Within these focus areas NDSS engages in various activities, events, and programs.
Prader – Willi California Foundation
Provides support to individuals diagnosed with Prader-Willi Syndrome, their families and care providers.
Williams Syndrome Association of America
WSA provides information and emotional support to individuals with William Syndrome and their families and professionals who work with them. They also develop programs and services, increase public awareness and encourage and support research in various needs of the individuals with William Syndrome.
22q11.2 Deletion Syndrome
22q Family Foundation
The mission of this organization is to raise awareness and provide accurate information about 22q11.2 deletion syndrome while connecting and supporting families.
UCLA 22q Clinic
This is a multidisciplinary specialty clinic for individuals with 22q11.2 deletion and duplication syndrome. The team includes a geneticist, genetic counselor, immunologist, cardiologist, and endocrinologist with consultation from neuropsychologist.
The MIND Institute 22q11.2 Research Center and Clinic at UC Davis
The UC Davis MIND Institute is an internationally renowned research center founded by families for families. Their mission is to raise awareness, understanding, prevention, and treatment of neurodevelopmental disabilities. They have ongoing research studies and a 22q Healthy Minds Clinic.
Cerebral Palsy (CP)
National Institute of Neurological Disorders and Stroke
The National Institute of Neurological Disorders and Stroke’s mission is to seek fundamental knowledge about the brain and nervous system to help those with neurological diseases. They are providing hope to those individuals with cerebral palsy through research.
The Center for Disease Control (CDC)
The CDC has been studying cerebral palsy since the early 1980's. They provide a wealth of information regarding facts, risk factors, causes, screening and diagnosis, treatment services, research, and real stories from people living with CP.
Epilepsy
Epilepsy Foundation
The Epilepsy foundation has a helpful toolbox which is downloadable to help people with epilepsy manage their illness and how it impacts their life, as well as teaching others about epilepsy and seizures. They have seizure action plans forms for schools and for anyone, seizure diaries, treatment factsheets, 24/7 Helpline, and Texting 4 control to help in seizure management.
Fetal Alcohol Spectrum Disorder (FASD)
American Academy of Pediatrics
This is a comprehensive toolkit put out by the American Academy of Parenting Website to empower parents with trusted information from pediatricians about FASD. The toolkit is to raise awareness, promote screen and encourage timely intervention.
National Organization of Fetal Alcohol Syndrome
This is a leading resource of the fetal alcohol spectrum disorder community. There is an abundance of information and resources for those with FASD or anyone who interacts with someone with FASD.
Fragile X
National Fragile X Foundation
The National Fragile X Foundation is dedicated to helping those with Fragile X with a focus on community, awareness, and research. They have a wealth of information on their website, including Fragile X Info Series printables, and educational and life strategies.
Selective Mutism
Selective Mutism Association
The Selective Mutism Association is a nonprofit organization whose mission is to provide information, resources and support to those who know a child with an anxiety disorder known as Selective Mutism. Their website has an online library addressing different topics such as educational planning, IEPs, 504s, school issues, parenting issues, assessments, and also an excellent selective mutism toolkit for educators.
Sleep
National Sleep Foundation
The National Sleep Foundation explains why sleep is so important in children, what happens if they don’t get enough sleep, and sleep hygiene tips.
