Our Mission
To provide support, information, and coordination world-wide 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 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 updated medical opinion
- Initiates and executes local, regional, and national meetings for families world-wide
- Creates and updates an extensive web page on the disorder
- Sustains membership in other rare disorder organizations
- Fosters scientific research collaborations world wide 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 for research 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
SERVICES
Family Support: The Family Support 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 AS.
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.
Web Site: Links to other AS organizations, and the latest news and developments in Alström Syndrome.
ASI Google Discussion ListServe: Provides a space for families to ask questions of and give support. http://groups.google.com/group/alstrom-syndrome-international.