We are committed to providing support, information, and coordination worldwide to families and professionals in order to treat and cure Alström Syndrome.
- Alström Syndrome International is a 501(c)(3) registered charity
- Advocates for patients in fifty two countries representing every ethnicity
- Provides families with the Alstrom Syndrome Handbook and 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 controls 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
- Initiates and executes local, regional, and national meetings for families
- Creates and updates a web page on the disorder
- Sustains membership in other rare disorder organizations
- Fosters scientific collaborations world wide on an individual and institutional level
- Provides all interested parties with diagnostic criteria and treatment recommendations
- Assumes a pivotal role in supplying data and “co-authoring” scientific papers
- Helps secure patient participation for studies
- Publishes an informative and far ranging newsletter, Panoramic Views, three times a year
- Designs and executes a substantial grass roots annual fund drive
- Secures grants and funding at institutional and philanthropic levels
Family Support: The Family Outreach Coordinators are 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 experts in Alström Syndrome. They offer a unique setting for mutual sharing and support. Conferences provide families with individual consultation, workshops, research clinics, 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 ASI office can access these professionals.
Education and Information: The Alstrom Syndrome Handbook is available on request. The ASI newsletter, Panoramic Views, focuses on pertinent issues and concerns related to Alstom Syndrome. The Family Packet includes information on such matters as the complex clinical features of Alström Syndrome, what is known about the ALMS1 gene, and a compilation of medical information on AS.
Awareness: Many family members raise awareness about Alstrom 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.
Last updated: October 5, 2014