Aicardi Syndrome Foundation
Support, resources and registry for people with this rare neurological disorder.
American Cleft Palate-Craniofacial Association (ACPA)
Resources for those with cleft lip and palate including Cleftline Bears (teddies with cleft stitches), educational materials, grants and scholarships.
Angelman Syndrome Foundation
Resources, research and info for those with AS.
Autoimmune Association
Fosters and facilitates collaboration of patients, researchers, and doctors in the areas of education, public awareness, research, and patient services.
Bohring-Opitz Syndrome/ASXL1
Dedicated to mapping those diagnosed with ASXL1 for research, resources, supports and developing best practices.
Burn Institute San Diego
Provides community education to prevent burn injury and programs and support to those affected by burn trauma.
California Chronic Care Coalition (CCCC)
Resources and information on prevention and healthcare reform for those with chronic conditions and diseases.
Christie’s Place
HIV/AIDS support center provides comprehensive education, support and advocacy to women, children and families impacted by HIV/AIDS.
CURE (Complex, Undiagnosed, Rare and Extraordinary)
Quarterly meetings with interesting speakers and Facebook support group for parents of children with special needs who do not know the etiology of their child’s condition or illness. Fun activities for children are available while the parents meet.
Guillain-Barre Syndrome Foundation International (GBS/CIDP)
Nonprofit that brings together professionals and families for research and support.
HypoPARAthyroidism Association, Inc.
Nonprofit patient organization working to improve lives touched by hypoparathyroidism through research, resources and education.
International Bipolar Foundation
Advances research toward the elimination of Bipolar Disorder, provides and enhances care, resources and support services and works to erase the stigma associated with mental illness through education.
International Rett Syndrome Foundation
Funds research for treatments and a cure for Rett Syndrome and provides information, programs and services to those living with it.
Jeffrey Modell Foundation for Primary Immunodeficiency
Nonprofit patient organization providing a physician finder, resources, research and advocacy for people with immune issues.
Little People of America (LPA)
Support and resources for those with Achondroplasia.
Mended Hearts
Support group for people with or recovering from heart disease moderated by professionals and volunteer heart patients to talk about the path of diagnosis, treatment and recovery.
Muscular Dystrophy Association
National organization dedicated to research and cure with resources for care, support and recreation.
National Organization for Rare Disorders (NORD)
We elevate care, advance research, and drive policy in a holistic manner to lift up the rare disease community and help with access to medication, diagnostics, caregiver support and other needs.
Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
Research, information and family supports for kids with Smith-Magenis Syndrome.
Prader-Willi Syndrome Association (PWSA) USA
Family support and medical resources for those with Prader-Willi Syndrome.
RARE Science and RARE Bear
Works with patient families and foundations to find immediate therapeutic solutions for children with rare diseases. Also creates one-of-a-kind bears, each with a unique serial number, for special children.
Encinitas, CA
www.rarescience.org
www.rarescience.org
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Information, research and coping strategies for those with RSDSA/ CRPS.
Sjögren’s Foundation
Information on diagnosis, treatment, support and clinical research on Sjogren’s Syndrome.
The Magic Foundation
Provides parent-to-parent support services for families of children with a variety of chronic and critical disorders and syndromes that affect a child’s growth.
Tracking Rare Incidence Syndromes (TRIS) Project
Seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and medical professionals.
Turner Syndrome Society
Provides resources, support and clinical care guidelines for those with Turner Syndrome.