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Health Associations Patient Organizations Blogs & Support
FEATURED RESOURCE: What is LAL?
LAL Solace is a support organization for patients and families affected by Lysosomal Acid Lipase Deficiency; both the early onset (Wolman's Disease) and the late onset (Cholesterol Ester Storage Disease). We provide resources such as education about the disease, clinical trial information, and the ability to share personal stories with other members of the LAL community.
FEATURED RESOURCE: Children's Growth Charts
The MAGIC Foundation (MAGIC) is a national non-profit tax exempt organization focusing on growth related issues in children and adult related disorders. With over 600 disorders affecting growth, MAGIC assists with networking and education on a multitude of disorders, including, but not limited to, Growth Hormone Deficiency and all disorders related to growth hormone therapy; renal deficiencies such as CRI; tumors that now require replacement hormone therapy; many syndromes such as Turner Syndrome; Russell Silver Syndrome; McCune-Albright Syndrome; Panhypopituitarism; Congenital Adrenal Hyperplasia (CAH); and many more.
Childhood Liver Disease Research and Education Network: ChiLDREN
The Childhood Liver Disease Research and Education Network (ChiLDREN) is a collaborative team of medical professionals working together to improve the lives of children and families dealing with rare liver diseases.
Congenital Heart Information Network
A national organization that provides reliable information, advocacy, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, and adults with congenital heart defects.
Fabry Support & Information Group
The Fabry Support & Information Group provides the Fabry community and the general public with information, advocacy, education, and compassionate support to improve quality of life and the quality of care.
Kidshealth.org from The Nemours Foundation
Has information on infections, behavior & emotions, food & fitness, and growing up healthy.
March of Dimes Birth Defects Foundation
Our mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.
North American Society for Pediactric Gastroenterology, Hepatology, and Nutrition
The mission of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition is to advance understanding of normal development, physiology and pathophysiology of diseases of the gastrointestinal tract and liver in children, improve quality of care by fostering the dissemination of this knowledge through scientific meetings, professional and public education, and policy development, and serve as an effective voice for members and the profession.