Executive Director Report

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Executive Director = Report

LRG Core Programs &= amp; Services

Staff and Volunteer= s

Local LRGs<= /font>

Country Representat= ives

25 Countries

Information & S= upport

Newsletter<= /font>

Website

Patient Based Resea= rch

Outreach & Netw= orking

Outreach & Netw= orking

Outreach & Netw= orking

Outreach & Netw= orking

Advocacy

Advocacy

Advocacy: Public Presentations

Advocacy: Public Presentations

Advocacy: Private

One on One Patient/Caregiver Assistance

New Initiatives=
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Executive Director = Report

November 22, 2003

LRG Core Programs &= amp; Services

Information & S= upport

Patient Based Resea= rch

Outreach & Netw= orking

Advocacy

One on One Patient/= Caregiver Assistance

New Initiatives

Staff and Volunteer= s

Local LRGs<= /font>

37 States

Alabama

Arizona

Arkansas

California

Colorado

Connecticut<= /td>

Delaware

Florida

Georgia

Hawaii

Idaho

Illinois

Indiana

Kansas

Massachusetts

Maryland

Michigan

Minnesota

Montana

Nebraska

Nevada

New Jersey

New Hampshire

New Mexico

New York

North Carolina

Ohio

Oklahoma

Oregon

Pennsylvania=

South Carolina

Tennessee

Texas

Utah

Virginia

Washington

Wisconsin

Country Representat= ives

25 Countries

Australia

Belgium

Canada

China

Costa Rica

Finland

France

Germany

India

Iran

Israel

Italy

Japan

Malaysia

Mexico

Morocco

Netherlands<= /td>

New Zealand<= /td>

Pakistan

Poland

Singapore

Switzerland<= /td>

Tunisia

United Kingdom

United States

Information & S= upport

Two List Servs: Gen= eral & Science

Website

Newsletter

Local LRGs

Country Representat= ives

Materials & Exh= ibits

Presentations

Internet Based Focu= s Groups

Newsletter<= /font>

Constantly Expanding Distribution

to lay and professi= onal audiences

Website

Expanded Medical Co= ntent

Search Engine

GIST Specialist Dir= ectory

Under Construction:= Complete New Design

Under Construction:= Expanded medical and non medical content

Patient Based Resea= rch

Side Effects Survey= s: New Research Design

Gleevec Effectivene= ss

Patient Care Satisf= action & Reporting

Ongoing Relapse and= Dosage Evaluation: New Research Design

New Drug Compliance= Survey

New Pediatric GIST = Data Base

New Sugen Drug Effe= ctiveness

New Sugen Drug Side= Effects

Other Drugs<= /td>

Outreach & Netw= orking

Medical Research Co= mmunity Dialogues

New Drug & Clin= ical Trial Monitoring

Newsletter

Website

Local Life Raft Gro= ups

Country Representat= ives

International Group= s & Alliances

Netherlands<= /td>

Germany

U.K.

Outreach & Netw= orking

Alliance with the M= AX Foundation

Cancer Care Directo= r is LRG E.D. Mentor

Patient Assistance<= /font>

Public Presentation= s

Vasella Book: The M= agic Cancer Bullet

Exhibitor at ASCO

Representation at

ASCO: Website Advis= or

National Cancer Ins= titute Sarcoma Progress Review Group

Co-Chair, National = Tissue Bank Committee

Outreach & Netw= orking

Armed Forces Instit= ute of Pathology (A.F.I.P.)

Association of On L= ine Cancer Resources (A.C.O.R)

American Medical In= formatics Association (A.M.I.A.)

American Associatio= n of Clinical Onology (A.S.C.O.)

Cancer Care<= /td>

Centers for Disease= Control (C.D.C.)

Connective Tissue O= ncology Society (C.T.O.S.)

Outreach & Netw= orking

Harvard Business Sc= hool

Max Foundation

National Patient Ad= vocate Foundation

National Cancer Ins= titute (N.C.I.)

Novartis

Patient Care Facili= ties: Dana-Farber, Fox Chase, OHSU, MD Anderson, etc, etc.

Pfizer

University of North Carolina-R.W.J. Project

Advocacy

Patient based resea= rch

combined with the a= bility to

publish results in = our Newsletter

gives us unique lev= erage

despite our small n= umbers

Advocacy

Newsletter Editoria= ls

Participation in Ad= Hoc National Consortium to Reform Medicare

Negotiated change i= n Novartis Financial Assistance Program to sliding scale

Introduced New Rese= arch Designs for Evaluating Side Effects and Dosage Based Relapse

Ongoing negotiation= s with Pfizer to change Sugen drug trial design

Advocacy: Public Presentations

Keynote Speaker at = first meeting of Life Raft Group, Cambridge Mass.

Keynote Speaker at = Novartis Research Facility Press Conference with Dan Vasella, Novartis CEO and Sen= ator Ted Kennedy, Cambridge Mass.

Keynote Speaker at International GIST Symposium, London, England

Keynote Speaker at International Patient Group Forum, Switzerland

Speaker at Meeting = of Connective Tissue Oncology Society (CTOS), San Francisco, California

Advocacy: Public Presentations

Speaker at Meeting = of American Informatics Association

Presenter at Meetin= g of Polish Journalists at Novartis Oncology H.Q., New Jersey

Presenter at Two Me= etings with Novartis Oncology Staff at Novartis Oncology H.Q., New Jersey

Presenter at Meetin= g with Pfizer Oncology Staff at Pfizer Corporate H.Q., New York City

Public Advocacy for= Gleevec Coverage in Australia and U.K.

Public Advocacy for= Pfizer clinical trial expansion

Advocacy: Private

Private Meetings wi= th

Dan Vasella, CEO of= Novartis

Senator Kennedy

George Demetri and = countless other key medical professionals

Behind the scenes p= atient interventions for

Compassionate Use o= f Gleevec

Access to Gleevec

Patient Care=

One on One Patient/Caregiver Assistance

Growing number

of GIST patients an= d caregivers

contact the LRG off= ice

for assistance

with financial

and strategic medic= al issues

New Initiatives=

Tissue Bank<= /td>

Pediatric GIST Proj= ect

Patients in Distres= s Project

International Docto= r to Doctor Patient Assistance Project

Website Redesign an= d expansion

Database Redesign a= nd expansion

Newsletter Distribu= tion expansion

Thanksgiving Fundra= ising Drive

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Executive Director Report

November 22, 2003

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<= /td> <= /td> <= /td> <= /td>

n In= formation & Support

n Pa= tient Based Research

n Ou= treach & Networking

n Adv= ocacy

n On= e on One Patient/Caregiver

As= sistance

n Ne= w Initiatives

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Staff and Volunteers

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Local LRGs

= Chicago

= Detroit

= Los Angeles

= New York

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37 States

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