Lynch Syndrome International Overview
Target demographics: Our target demographics are medical professionals and individuals who are at high risk for Lynch syndrome, internationally.
Direct beneficiaries per year: The direct beneficiaries of our endeavors are those individuals at high risk for Lynch syndrome, worldwide--and their families as well as medical professionals.
Someone who had 3 hours of volunteer time could: E-mail churches, asking them to join us in our public awareness campaign and make it their mission to create public awareness on Lynch syndrome.E-mail organizations and associations and ask them to join us in making it their mission to promote public awareness of Lynch syndrome to their membership.Speak in front of local organizations.Deliver brochures to a medical facility and to each individual physician's office.Provide support and resources, by email or by telephone, or in person, to an individual with Lynch syndrome.Raise funding for LSIMany other projects, in accordance with their capabilities.
Geographic areas served: Internationally
Programs: Public Awareness: Relay for Life Teams, Facebook Social Networking, Twitter Social Networking, Website, Flash Mobs, Lynch Syndrome Community days at regional institutions, Governors Campaign for Lynch Syndrome Public Awareness Day, Faith Based Public Awareness Campaign, Association Public Awareness Campaign, Mass Media Public Awareness Campaign
Education: Exhibiting at Conferences, Speaking at CME Classes, Preparing videos for medical schools, Professional pages upon our website
Support: Online support via email; telephone support via phone, personal support from other survivors, extensive resource pages on website, website, promotion of Lynch syndrome Survival days at various institutions, provision of information on resources for genetic discrimination.
Government: Providing input from a patient perspective, on Lynch syndrome; advocacy for funding for Lynch syndrome related projects; minimal lobbying for Lynch syndrome related legislation, provision of input regarding Lynch syndrome.
Institutions: Clinical Trials information and recruitment for Lynch syndrome related clinical trials, provision of Lynch Syndrome International published materials. Assistance with facilitating Lynch syndrome survivor days.
LSI, an all volunteer organization, is founded and governed by Lynch syndrome survivors, their families, and health care professionals who specialize in Lynch syndrome.
If diagnosed early, we believe Lynch syndrome survivors have favorable outcomes from Lynch associated cancers. We believe these outcomes enhance survival, the longevity and quality of life as well as the emotional well-being of the afflicted.
With the provisions of knowledge, caring and respect for those living with Lynch syndrome, coupled with a common theme of a prevalent positive attitude, we can be change agents, enhancing hope and survivability, impacting the life of countless thousands of people throughout our world.
Our website boasts approximately 6,000 visits per month, many of which are international. Our most active page is LSI Library, a comprehensive data site of where to find studies and publications on Lynch syndrome.
We receive approximately twenty to twenty five emails per week, requesting information on Lynch syndrome and personal support. We receive approximately fifty telephone calls per week from institutions, medical professionals, individuals recently diagnosed, etc.
We have approximately 120 active volunteers in the U.S. and approximately forty outside the U.S.
We are involved with approximately eighteen different cancer associations.
Governors of twelve U.S. states declared March 26, 2011, Lynch Syndrome Public Awareness Day, in response to public awareness provided their offices.
We advocate genetic testing for Lynch syndrome and universal testing for MSI-IHC pathology, a precursor test of tumors to determine if characteristics of Lynch syndrome exists. Testing has dramatically increased as a direct result of public awareness.
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