The Morgan Leary Vaughan Fund Provides Update on Natural History Registry

for Necrotizing Enterocolitis

Morgan's Fund adds three new surveys to the Natural History Registry for Necrotizing Enterocolitis
(NEC Registry). The surveys encompass the neonatal (newborn) period, feeding, and Necrotizing
Enterocolitis (NEC) diagnosis and treatment.

Naugatuck, CT, September 07, 2017 --(PR.com)-- The Morgan Leary Vaughan Fund (Morgan's Fund)
today announced that three new surveys are open on the Natural History Registry for Necrotizing
Enterocolitis (NEC Registry). The surveys encompass the neonatal (newborn) period, feeding, and
Necrotizing Enterocolitis (NEC) diagnosis and treatment.

The NEC Registry is a collaborative effort between Morgan's Fund and the National Organization for
Rare Disorders (NORD) to study NEC. Morgan's Fund was selected by NORD to create the NEC
Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration that
supports research on rare diseases and how they progress over time - natural history studies.

Overview of Research Study

The NEC Registry is more than a versatile online system that securely collects and stores data for medical
research; it is a dynamic participant-driven resource that can empower and unite the NEC community
through shared knowledge. Registry participants not only can complete surveys about their own disease
experiences, but also can learn about other participants' experiences by viewing aggregated survey data.
As the registry sponsor, Morgan's Fund ensures that data privacy and confidentiality are strictly
maintained. Participation in the NEC Registry is free and voluntary, and participants may withdraw at any
time.

Community Involvement
The NEC Registry is a powerful opportunity for individuals with NEC and their family members to
contribute directly to research that will enhance our understanding of NEC, thus facilitating the
development of new diagnostic and treatment options for the NEC community. Participation is especially
vital given the rarity of NEC - every patient experience is a unique and invaluable part of the natural
history of NEC.

For more information or to join, visit NECregistry.org

About Necrotizing Enterocolitis

NEC is a rare, inflammatory disease that leads to necrosis (death) of the intestine. It is predominately due
to prematurity and its statistics are startling. NEC is the second leading cause of death in premature
infants. NEC is the 8th leading cause of death during the newborn period (the first 28 days of life). NEC
affects about 9,000 of the 480,000 infants born preterm each year in the United States. All newborn
infants born preterm or born with a low birth weight (less than 5.5 pounds) are at increased risk for NEC.
The smaller the infant or the more premature the delivery, the greater the risk. (Sources: UC Davis Health
System, CDC/NCHS, and NICHD.)

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About The Morgan Leary Vaughan Fund
The Morgan Leary Vaughan Fund emerged from a need to establish a mechanism for:
Disseminating credible and timely information about Necrotizing Enterocolitis to parents whose infants
are most at risk for developing NEC
Raising the level of public awareness about NEC and the potentially devastating effects it can have on
infants and their families
Advancing research to prevent, diagnose, treat, and ultimately, cure NEC

Currently, it is headquartered in Naugatuck, Connecticut and has a satellite office in Austin, Texas.

About NORD
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare
diseases and the organizations that serve them. NORD, along with its more than 250 patient organization
members, is committed to the identification, treatment, and cure of rare disorders through programs of
education, advocacy, research, and patient services.

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Contact Information:
The Morgan Leary Vaughan Fund, Inc.
Stephanie M. Vaughan
203-606-4873
Contact via Email
www.morgansfund.org

Online Version of Press Release:

You can read the online version of this press release at: http://www.pr.com/press-release/729085

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