Our Mission
To provide support, information, and coordination world-wide to families and professionals effectively treating Alström Syndrome as we work toward a cure.
Alström Syndrome International is a 501 (c) (3) registered charity
Advocates for patients in forty-seven countries representing every ethnicity
Provides families with a Family Packet of detailed information and resources
Advances communication with existing and developing national support groups
Preserves balance in its three programs: Family Support, Education, and Research
Develops, maintains, and manages the largest Alström Syndrome clinical database in existence
Sponsors major international scientific meetings
Conducts international family conferences
Consults with researchers and physicians at hospitals and institutes for an updated medical opinion
Initiates and executes local, regional, and national meetings for families worldwide
Creates and updates an extensive web page on the disorder
Sustains membership in other rare disorder organizations
Fosters scientific research collaborations worldwide on an individual and institutional level and assumes a pivotal role in supplying data and “co-authoring” scientific papers
Provides all interested parties with up-to-date diagnostic criteria and treatment recommendations
Helps secure patient participation in research studies
Publishes an informative and far-ranging newsletter, Panoramic Views, three times a year
Designs and executes a substantial grassroots annual fund drive
Secures grants and funding at institutional and philanthropic levels
SERVICES
Family Support: The Family Outreach Coordinator is pleased to answer questions personally and offer individual support when those in need call or write. No question is too small or too complex. Through its extensive contact with families, physicians, and researchers, ASI has built a solid core of knowledge and understanding about Alström Syndrome.
Meetings: International Conferences make it possible for families, care givers, and professionals to hear current information on Alström Syndrome presented by Alström Syndrome experts. They offer a unique setting for mutual sharing and support. Conferences provide families with individual consultation, workshops, and countless opportunities to meet and socialize with others.
Alström Syndrome Medical and Professional Experts: A caring group of specialists is “on-call” to offer help regarding health, development, and education issues. Contacting the foundation office can access these professionals.
Education and Information: The ASI newsletter, Panoramic Views, focuses on pertinent issues and concerns related to Alstöm Syndrome. The Family Packet includes information on such matters as the complex clinical features of Alström Syndrome, what is known about the ALMS gene, and a compilation of medical information on ASI.
Awareness: Many of our family members raise awareness about Alström Syndrome through public activities and media events. These families are passionate about increasing public consciousness and disseminating information to the community at large, including professionals.
Jamie’s Resource List for the Visually Impaired (PDF)
Web Site Links to other AS organizations, and the latest news and developments in Alström Syndrome.
