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Lupus Awareness and Education Resources
May 2, 2017
Vision:
A life free from lupus
Mission:
The Lupus Foundation of America is dedicated
to improving the quality of life for all people
affected by lupus through programs of research,
education, support, and advocacy.
Who is the Lupus Foundation of America?
2
Strategic Outcomes
Reduce the time to disease diagnosis
Ensure people with lupus have an arsenal of safe and effective treatments
Expand direct services and
increase access to
treatments and care
Greatly expand funding to achieve
our mission
Disease Specific & Patient Centric
Estimated 1.5 million Americans
90% are women
15% diagnosed are children
Lupus is 2-3x more prevalent
among women of color
Most diagnosed between ages 15-
44
10% will have symptoms of more
than one connective tissue
disease
20% will have a parent or sibling
with lupus
Who Gets Lupus
Lupus can attack any organ such
as the heart, lungs, kidneys or brain
Symptoms appear differently and
can increase or decrease in
severity from day to day.
There is no single test to diagnose
lupus.
Average of 6 years for a diagnosis
63% reported being incorrectly
diagnosed.
- More than half those who were
misdiagnosed saw 4 or more
doctors.
Complicated Path To Diagnosis
“ My mouth is so full of
sores that eating bread is
like eating broken glass.”
“ By the time I was diagnosed,
I was near death.”
“ I was
misdiagnosed for
years.”
“ What is wrong with me?”
“ Lupus shows no mercy.”
Words from Those with Lupus
Awareness of lupus among Americans is
BROAD but NOT DEEP
Moving the Needle Status of Awareness
81% have heard of lupus
60% More than
know little or nothing about the disease
Nearly 3/4th of Americans (age 18-34) have never heard of lupus or know nothing beyond the name
Guiding Action
Blueprint for public health action in
lupus; helps guides future policy,
planning, advocacy and action
initiatives
- Partners United for Sustainable Lupus
Education and Awareness (PULSE) –
CDC cooperative Agreement
- IMPACT – OMH grant
National Public Health Agenda for Lupus
Improve one’s life journey with lupus by
supporting the general population and
HCPs through the initial process of asking
“could it be lupus?” to ensuring that those
individuals diagnosed with the disease are
equipped with resources to manage it
effectively.
Partners United for Lupus Sustainable Education (PULSE)
Goals
Sustainable Partners
Awareness Knowledge and skills
600+ resources in English and Spanish
Audience tailored
Easy to locate, share and print
Launched in March 2017
Contact National Resource Center on
Lupus Director, Latifa Boyce, at
A Home for All Things Lupus
Resource Center
For Nations, States, Communities & Individuals
A Capacity Building Resource
How can the Lupus Foundation of America Resource
Center Help?
Be Fierce
- Targeting African American and
Latino women ages 18-25
-Recognizing the signs and
symptoms of lupus and what to do
if lupus is suspected
-Digital focused campaign
- Targeting early June 2017 launch
Awareness Campaign
More than 65 (and growing) individuals and
organization representatives providing guidance,
expert opinion and message dissemination
- Foundation chapter and regional office representatives
- Advisory Board Members (e.g., NACDD)
- Industry leaders (e.g., Biogen, EMD Serono, B-I)
- Medical professionals (e.g., Drs. Manzi, Werth, Somers)
- Medical groups (e.g., NHMA, Rheumatology Nurses
Society)
- Patient groups (e.g., American Chronic Pain Foundation,
National Alliance for Hispanic Health)
- Public Health Agenda for Lupus contributors
- People with lupus and caregivers
- Bloggers
National Lupus Partners Network
Local Community Engagement
Status updates on Foundation initiatives
Access to toolkits tied to launch of new
programs
National Resource Center on Lupus
Foundation health educators available to
answer questions
Local chapters to provide education and
support in local markets nationwide
And more…
Resources & Tools Available to You
Become a member of our National Lupus
Partners Network (NLPN)
Share lupus awareness and education tools
Utilize our program toolkits and if there are
additional tools you need, let us know
Implement your own lupus awareness
initiatives
- Participate in Lupus Awareness Month Activities
Forge partnerships with local organizations
that support shared goals and your local
Lupus Foundation of America Chapter
What You Can Do
