Causes: Digestive Diseases & Disorders, Health
Mission: "Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome. "The ALGSA is the primary resource for people with ALGS, their families and friends who form a close-knit community to provide mutual support, share information, and connect to resources. As the source of current, accurate information on ALGS and its treatment, we provide financial support for research and are actively involved in encouraging our members to participate in research studies. We support families and individuals with ALGS, provide up to date information on ALGS to patients and their health care providers, and connect patients with research opportunities. We are building a better life with ALGS through advocacy, education and research.
Results: Today we have an unbelievable 3-way CRADA agreement with NIH/NCATS and Retrophin for novel science looking at the root cause of ALGS. We have partnered in many scientific projects around the globe, strive to work with and collaborate with researchers, clinicians, scientists, biotech, and pharma companies to bring ALGS scientific discovery into the forefront. We are looking to bring better treatments to families and we're not stopping until we make that happen.
Target demographics: Everyone with ALGS - infants, children, teens, young adults, adults. . . as well as their families, care givers, and health care providers.
Geographic areas served: Worldwide
Programs: We have a website at www. alagille. org with a wealth of information and links to helpful resources, as well as a bulletin board. We are on Facebook, Twitter and YouTube, publish a quarterly newsletter, and offer several helpful publications for families including a DVD on ALGS. Every three years we host a family symposium, and in the years in between we host AGS Family Education Days.
Mission: "Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome. "The ALGSA is the primary resource for people with ALGS, their families and friends who form a close-knit community to provide mutual support, share information, and connect to resources. As the source of current, accurate information on ALGS and its treatment, we provide financial support for research and are actively involved in encouraging our members to participate in research studies. We support families and individuals with ALGS, provide up to date information on ALGS to patients and their health care providers, and connect patients with research opportunities. We are building a better life with ALGS through advocacy, education and research.
Results: Today we have an unbelievable 3-way CRADA agreement with NIH/NCATS and Retrophin for novel science looking at the root cause of ALGS. We have partnered in many scientific projects around the globe, strive to work with and collaborate with researchers, clinicians, scientists, biotech, and pharma companies to bring ALGS scientific discovery into the forefront. We are looking to bring better treatments to families and we're not stopping until we make that happen.
Target demographics: Everyone with ALGS - infants, children, teens, young adults, adults. . . as well as their families, care givers, and health care providers.
Geographic areas served: Worldwide
Programs: We have a website at www. alagille. org with a wealth of information and links to helpful resources, as well as a bulletin board. We are on Facebook, Twitter and YouTube, publish a quarterly newsletter, and offer several helpful publications for families including a DVD on ALGS. Every three years we host a family symposium, and in the years in between we host AGS Family Education Days.
Health
Collierville
