Guidance Education Support www.sarcomaalliance.org CONNECTIVE TISSUE ONCOLOGY SOCIETY November 2006 SARCOMA ALLIANCE Arthur Beckert Executive Director.

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Presentation transcript:

Guidance Education Support CONNECTIVE TISSUE ONCOLOGY SOCIETY November 2006 SARCOMA ALLIANCE Arthur Beckert Executive Director

MISSION The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support Guidance Education Support

FOUNDED IN 1999 Suzanne Leider, a synovial sarcoma patient, founder Vision to create organization to serve all sarcoma patients Web based program essential to reach individuals with a rare disease spread over wide geographic area Guidance Education Support

WHO WE SERVE Sarcoma patients, family members and caregivers All types of sarcoma Patients contact us from around the world Guidance Education Support

PROGRAMS – WEB BASED Basic information on sarcoma and its subtypes Where to seek treatment Links to other sites Bulletin board Chats – Wednesday and Sundays Guidance Education Support

PROGRAMS Newsletter Sarcoma Awareness Week Assistance Fund Peer to Peer Program General Advocacy Guidance Education Support

ASSISTANCE FUND Important to at least get a second opinion from a sarcoma specialist Reimburse up to $1000 for any expenses related to getting a second opinion Expenses include professional fees, testing, travel, hotel, food Will include expenses for one caregiver Guidance Education Support

PEER TO PEER PROGRAM Match individuals based on their own stated preferences, e.g. diagnosis, sex, age, etc. Individuals communicate by , phone, in person Guidance Education Support

OUR ROLE IN RESEARCH Refer patients to sarcoma centers and clinical trials Support budget process that impacts sarcoma funding Supports legislation, i.e. clinical trials, drug availability Guidance Education Support

COLLABORATION WITH OTHER GROUPS Provide links on our website Maintains directory of sarcoma advocacy groups and foundations Communicate via phone and Coordinate responses on national issues Planning advocacy group meeting in Seattle Guidance Education Support

HOW CAN YOU HELP US Tell us what programs would be helpful for patients in your practice Since we receive inquiries from all over the world tell us about sarcoma resources in your community or country Guidance Education Support

HOW YOU CAN HELP YOUR PATIENTS Tell them about the Sarcoma Alliance and other advocacy groups Refer to our website Make sure your nursing and social work staff is aware of resources outside you facility Guidance Education Support

HOW TO CONTACT US Sarcoma Alliance, 775 E Blithedale Ave #334, Mill Valley, CA Telephone: See me today!!!! Guidance Education Support