CLF 2012-13 Annual Rpt - page 14-15

Cutaneous Lymphoma Foundation
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2012-2013 Annual Report
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Looking Ahead
C
L
F
We rely on the foundation for
information that enables us to get
the best care for my husband. The
foundation’s tireless efforts to create a
network of support for those diagnosed
with this disease - as well as a forum
for the world’s top CTCL doctors to
collaborate - gives us hope that we
will find a cure before too long!
Amy, Concord, NH
Looking ahead to the next fiscal year and beyond, to continue to expand upon our mission and programs, we are focused
on the following initiatives:
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First CLARIONS Research Grant awards and results.
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Annual Two-Day Patient Conference in Kansas City in June, 2014 and San Diego in 2015.
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Continued focus on patient-reported outcomes and engagement of the cutaneous lymphoma patient community in
registries and other technologies that include the patient experience in the data collection process for use in various
types of research.
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Leveraging technology to bring patient programs to the fingertips of everyone living with cutaneous lymphoma.
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Completion of the 2012-2015 Strategic Plan and development of the next three-year plan.
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Enhancement and expansion of live patient programs and networking events across the United States, Canada and
other countries.
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Strengthen collaborative relationships with patient advocate organizations and clinical professional groups such as
the Lymphoma Coalition, Coalition of Skin Diseases, Lymphoma Research Foundation, United States Cutaneous
Lymphoma Consortium, International Society for Cutaneous Lymphoma, Dermatology Nurses Association and others.
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Increase exposure to legislative and regulatory agencies through cooperative projects with patient advocate and
industry organizations.
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Continued education of and outreach to the general public to raise awareness of cutaneous lymphoma.
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Continued outreach to clinical professionals about cutaneous lymphoma, how to diagnose and treat patients as well as
provide connections to experts in the field.
Accuracy Statement
The report recognizes contributions received by the Cutaneous Lymphoma Foundation July 1, 2012 through June 30, 2013. Please
accept our apologies if we have made any errors or omissions with your name or gift. If your listing requires correction, we apologize
and ask you to contact us at
or 248.644.9014.
“I absolutely loved this (2-day)
conference. It enriched my life.”
2012 YIA Awardee Sima
Rozati, MD with CLF Board
Member Pierluigi Porcu, MD
Attendees at first 2-Day
Cutaneous Lymphoma
Patient Conference
1,2-3,4-5,6-7,8-9,10-11,12-13 16
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