The Williams Syndrome Association’s (WSA) mission is to advance the interests of all individuals with Williams syndrome throughout their lifespan by providing programming and resources, supporting research, promoting partnerships and connections, and ensuring that the infrastructure of the organization has the capacity to lead our community toward its goals.
Information and resources for
Read moreSupport network for anyone who cares about people with Alagille Syndrome, a genetic liver disorder. Information, education, newsletter, phone support, referrals, and scientific advisory board.
Read moreThe CdLS Foundation is a national, non-profit organization that has served individuals with CdLS and their families since 1981. A thought leader in the world of rare diseases, (of which there are over 7,000 known today), the Foundation is the only organization in the United States that develops programs and services for people with CdLS and those
Read moreResource and Network of families affected by these rare genetic metabolic Fatty Oxidation Disorders such as MCAD, LCHAD, VLCAD, CPT 1 & 2, SCAD, GA 2 etc. Online newsletter, information and referrals, phone/email support, Conferences, Facebook closed group and grief support. Professionals are welcome as well. All services are free.
Read moreEducation and support for malignant hyperthermia susceptible families, information for health care professionals, and limited research. Newsletters and regional conferences. Malignant hyperthermia (MH) is a potentially fatal, inherited disorder usually associated with the administration of certain general anesthetics and/or the drug succinylcholine. The disorder is due to an acceleration of metabolism in skeletal muscle.
Read moreNational support agency that promotes opportunities for individuals with disorders of the corpus callosum. Offers resources and information
Read moreMutual support for families of children born with anorectal malformations who have, or will have, a pull-through type surgery. Also for families of children with ostomies or incontinence. Newsletter, information, referral, phone support, and literature.
Read moreInformation about Wilson’s Disease. Mutual support and aid for those affected by the disease and their families. Promotes research into treatment and cure. Quarterly newsletter and telephone support network.
Read moreEmotional support and information for persons with alpha 1 antitrypsin and their families. Networking of members through newsletter, sharing of current information on treatments and research, pen pals, newsletter, and group development guidelines.
Read moreDedicated to improving educational success of children with special need and/or gifts and talents.
Information and resources on a variety of issues, including Attention Deficit Disorder, gifted children, behavior disorders, inclusion, etc. Advocacy and professional development activities.
Read more