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Presentation to the Centers for Disease Control and Prevention
May 2008
Overview
• Organizational Background
• Project Goals
• Partnerships
• Evaluation Activities
• Memorable Moment/Highlight
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ORGANIZATIONAL BACKGROUNDOur mission is to eradicate lymphoma and serve those touched by this disease.
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Organizational Background
• The Lymphoma Research Foundation (LRF) is the nation’s largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease.
• Our mission is to eradicate lymphoma and serve those touched by this disease.
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PATIENT PROGRAMSOur mission is to eradicate lymphoma and serve those touched by this disease.
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Patient Services and Education
• Lymphoma Support Network
• Patient Aid Grants
• Lymphoma Helpline & Clinical Trials Information Service
• Informational Teleconferences and Webcasts
• In-person Conferences
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Free Publications• Booklets
– Understanding Non-Hodgkin Lymphoma– Understanding Hodgkin Lymphoma
• Fact Sheets– Disease-specific – Treatment-specific– Multi-lingual Fact Sheets
• Newsletters– Lymphoma Today– Research in Focus
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PROJECT GOALSOur mission is to eradicate lymphoma and serve those touched by this disease.
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CDC Goals
• Goal 1: To increase awareness of and access to LRF’s lymphoma-specific education resources and patient support services for lymphoma patients, family members, friends and caregivers.
• Goal 2: To develop, test and disseminate new education resources for underserved lymphoma patients, family members, friends and caregivers for which no material currently exists.
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Goal 1- Year 1 Activities• Develop and disseminate promotional material
– Aim: Promote LRF’s primary website (www.lymphoma.org) and the Lymphoma Helpline and Clinical Trials Information Service
– Material• Pens/Lanyards• Notepads• Promotional signage
– Dissemination• Healthcare providers• Patients, survivors and loved ones
• Promote new booklets• Increase awareness of existing patient education programs• Ed Forum webcasting and CD recording • “Transcreate” info into Spanish
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Goal 2- Year 1 Activities• Develop material for rare forms of lymphoma
– Primary Central Nervous System Lymphoma– B-cell Cutaneous Lymphoma (in collaboration with the Cutaneous Lymphoma
Foundation)– T-cell lymphomas
• Angioimmunoblastic Lymphoma• HTLV-1 Adult T-cell leukemia/lymphoma• Peripheral T-Cell Lymphoma• Anaplastic Large Cell Lymphoma
• Young Adult Lymphoma Survivorship Program – Video podcasts
• Indolent lymphomas in their 20s and 30s• Young adult care partners
– Presentation at the Association of Oncology Social Worker
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PARTNERSHIPSOur mission is to eradicate lymphoma and serve those touched by this disease.
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Institution / Organization• AIDS Organizations (2)• American Brain Tumor Foundation• Arizona Cancer Center• Brain Tumor Society• Cancer Care, Inc.• Cancer Institute of New Jersey• Candelighter’s Childhood Cancer Foundation• Center for Immigrant Health• Children’s Cancer Cause• Comprehensive Cancer Controls Program• Cutaneous Lymphoma Foundation• Dana-Farber Cancer Institute• Fred Hutchinson Cancer Research Center• Gilda’s Club• Hackensack University Medical Center• International Waldenstrom’s Macroglobulinemia Foundation• Lance Armstrong Foundation• Mayo Clinic• MD Anderson Cancer Center• National Brain Tumor Foundation• National Marrow Donor Program• National Organization of Rare Diseases• New York Presbyterian Hospital-Weill Cornell Medical College
• Gilda’s Club• Hackensack University Medical Center• International Waldenstrom’s Macroglobulinemia Foundation• Lance Armstrong Foundation• Mayo Clinic• MD Anderson Cancer Center• National Brain Tumor Foundation• National Marrow Donor Program• National Organization of Rare Diseases• New York Presbyterian Hospital-Weill Cornell Medical College• NIH- Office of Cancer Survivorship • NIH- Office of Rare Diseases• Other hospitals and community cancer centers• Robert H. Lurie Comprehensive Cancer Center of Northwestern
University• Ulman Cancer Fund• University of Minnesota Cancer Center• University of Nebraska Medical Center• NIH- Office of Cancer Survivorship • NIH- Office of Rare Diseases• Other hospitals and community cancer centers• Robert H. Lurie Comprehensive Cancer Center of Northwestern
University• Ulman Cancer Fund• University of Minnesota Cancer Center• University of Nebraska Medical Center
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EVALUATIONOur mission is to eradicate lymphoma and serve those touched by this disease.
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Evaluation
• Quantitative – Metrics from website, Helpline and webcasts– Metrics monitoring program attendance and people
new to LRF (not previously in database) resulting from the placement of advertisements in local communities
• Qualitative– Young adult resources (committee and users)– Rare lymphomas- need for future disease types
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MEMORABLE MOMENTS/HIGHLIGHTS
Our mission is to eradicate lymphoma and serve those touched by this disease.
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Memorable Moments
• Overall increase in attendance– Local (Ask the Doctor)- Up 53% from 2007– Regional (Lymphoma Workshops)- Up 43% from 2007– Teleconference- Most people ever on disease-specific calls (CTCL,
Post-ASH)
• Becoming more age-appropriate– Switch from synchronized audio/slide webcasts for young adults– To much “cooler” video podcasts (3-5 minutes in length)
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