Early Diagnosis Of Children With Primary Immunodeficiencies Focus Of
Nationwide Awareness Campaign For School Nurses
CSL Behring Assists The Jeffrey Modell Foundation and National Association of
School Nurses to prepare an information blitz to improve early referral and
KING OF PRUSSIA, Pa., Aug. 28, 2014
KING OF PRUSSIA, Pa., Aug. 28, 2014 /PRNewswire/ --School nurses reach 98
percent of the 50,000,000 students in U.S. public schools, grades k-12, and
are uniquely positioned to facilitate the early diagnosis of serious medical
conditions such as primary immunodeficiency (PI).
CSL Behring logo.
Even when symptoms are recognized and an appropriate referral is made,
diagnosing PI can still be challenging because there are more than 250 PIs and
they do not always present in clear patterns. As a result, the underlying
cause often goes undetected.
In an effort to reduce the number of undiagnosed cases of PI in school
children, CSL Behring has awarded a Local Empowerment Advocacy Development
(LEAD) grant to the Jeffrey Modell Foundation (JMF) to develop an education
campaign in collaboration with the National Association of School Nurses
(NASN). The campaign will help nurses recognize the symptoms of PI in school
children and facilitate their referral to a physician.
PIs, according to Vicki Modell, Co-Founder of JMF, are underdiagnosed in
children who present with chronic, recurring, and persistent infections.
"Quite often, school nurses are the first 'line of defense,' in recognizing
that these children suffer from repeated infections and missed days at
school," Modell said. "Educating school nurses about the immune system and the
10 Warning Signs of primary immunodeficiency will lead to early and precise
diagnosis, appropriate treatment and improved quality of life."
NASN is customizing content supplied by JMF to meet the needs and appeal to
school nurses as part of the PI awareness campaign. This includes producing
English and Spanish-version posters that will be mailed to its approximately
16,000 members. NASN will distribute another 1,500 posters in conference bags
at its annual meeting.
In addition, NASN will leverage its journal, websites, social media and weekly
digest banner placement to promote PI awareness.
A second communication to school nurses reinforcing messaging around PI will
also be distributed. In April, NASN will plan promotional activities around
World PI Week, including a radio podcast episode, social media, weekly digest
blurb and banner.
Dennis Jackman, CSL Behring's senior vice president for global healthcare
policy and external affairs, said educating more school nurses about PIs can
have far reaching impact on students and their communities. "Arming school
nurses with the knowledge to more quickly recognize symptoms of primary
immunodeficiencies, and encouraging them to have candid conversations with
students and their families about the disorder, will lead to improved student
well-being and success," Jackman stated.
LEAD grants have also been presented to Greater Florida Hemophilia Foundation
(GFHF) and Ohio Bleeding Disorders Council (OBDC).GFHF's grant will be used
to conduct an educational program for social workers at Hemophilia Treatment
Centers in Florida. The program consists of a workshop that offers the most
updated information about the Affordable Care Act and Medicaid so that social
workers can more effectively assist patients and their families with reviewing
and changing plans and/or choosing new insurance plans.
OBDC's grant will be used to support ongoing advocacy initiatives in the state
oproviding guidance and input to the Ohio Department of Insurance, and also
directly to insurance providers, to ensure that issues critical to the
bleeding disorders community are considered in all available marketplace
oworking with legislators and members of the administration to ensure that
any transition of children with hemophilia into Medicaid managed careis
continually monitored for accessibility to quality health care.
To date, CSL Behring has awarded 55 LEAD grants to patient advocacy
organizations totaling more than $729,000 since the program was established in
2008. Proposals are being accepted for the next grant cycle. The deadline for
submitting a proposal is October 31, 2014.
About CSL Behring
CSL Behring is a leader in the plasma protein therapeutics industry. Committed
to saving lives and improving the quality of life for people with rare and
serious diseases, the company manufactures and markets a range of
plasma-derived and recombinant therapies worldwide.
CSL Behring therapies are used around the world to treat coagulation disorders
including hemophilia and von Willebrand disease, primary immune deficiencies,
hereditary angioedema and inherited respiratory disease, and neurological
disorders in certain markets. The company's products are also used in cardiac
surgery, organ transplantation, burn treatment and to prevent hemolytic
diseases in the newborn.
CSL Behring operates one of the world's largest plasma collection networks,
CSL Plasma. CSL Behring is a global biopharmaceutical company and a member of
the CSL Group of companies. The parent company, CSL Limited (ASX:CSL), is
headquartered in Melbourne, Australia. For more information, visit
About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in
memory of their son Jeffrey, who died at the age of fifteen from complications
of Primary Immunodeficiency – a genetic condition that is chronic, serious,
and often fatal.
JMF is a global nonprofit organization dedicated to early diagnosis,
meaningful treatments and, ultimately, cures through research, physician
education, public awareness, advocacy, patient support, and newborn screening.
The Jeffrey Modell Centers Network (JMCN) includes 556 physicians at 234
academic institutions in 196 cities and 78 countries spanning 6 continents.
For more information about PI, visit www.info4pi.org or email the Jeffrey
Modell Foundation at email@example.com.
Natalie de Vane, CSL Behring Chris Florentz, CSL Behring
SOURCE CSL Behring
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