CONGENITAL ADRENAL HYPERPLASIA RESEARCH EDUCATION & SUPPORT FDTN (CARES Foundation)
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Mission Statement
CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research. CAH is a family of genetic disorders affecting the adrenal glands. It inhibits the body’s ability to produce cortisol (the stress hormone).
About This Cause
CARES Foundation, Inc. was established in 2000 to promote education and research for Congenital Adrenal Hyperplasia while providing the resources and the latest information available for managing life and health for people with this disorder. CARES serves the CAH community in every state in the US and over 60 countries outside the US. CARES programs benefit over 3,200 families and medical professionals across the United States and abroad. These programs include: Research Since our inception in 2000, CARES Foundation has granted hundreds of thousands of dollars towards medical research. Our goal is to seek better treatment methods for those affected with CAH and to ultimately find a cure. Education As the only organization in the United States solely dedicated to CAH, CARES educates individuals, families and healthcare professionals about CAH through our comprehensive website, newsletters, regional conferences and other resources. Support Our support groups across the United States and abroad enable individuals and families to meet with each other, share stories and address each other’s medical concerns. We also offer one-on-one support to affected individuals and their families through email and telephone communication, as well as occasional face-to-face meetings and social gatherings. Comprehensive Care Centers CARES has engaged the world’s leading CAH experts to write guidelines for the establishment of comprehensive care centers (Centers of Excellence for CAH). Efforts are underway to establish the first pilot center which will encompass CAH care from diagnosis into adulthood and throughout life. Newborn Screening Advocacy Identifying CAH at birth can save a baby’s life. CARES has successfully advocated throughout the US for newborn screening. As of 2008, CAH is included on every state’s newborn screening panel. We monitor states’ newborn screening programs to identify and respond to any adverse impact of budget cuts on universal screening. Internationally, we continue to advocate for newborn screening in other countries in collaboration with other stakeholders and families. Emergency Medical Service Protocols Our most recent advocacy effort is to help establish protocols for emergency workers to administer life-saving medications to people in adrenal crisis. Currently, this life-saving medication is not carried on EMS trucks and EMS workers are not allowed, or trained, to administer the life-saving injection in most states. If you would like to become involved in this campaign, please contact CARES. Ask the Expert Service Our medical director provides answers to questions about treatments, care and living with CAH to affected individuals and their families through an online service. Physician Referral Service Affected individuals and their families can contact CARES for help locating a physician in their area who has knowledge and experience with CAH.