because the cost of doing nothing is too great
200. The number of children
born with EB every year in the
United States, which equates to
1 in 20,000 births. Both genders
and all racial and ethnic
backgrounds are affected.
D
$418,727. The total
E pidermolysis
value of the boxes of supplies
that debra of America shipped
to EB families in 2014.
B
A ssociation
child with EB may need every
year in order to swallow liquids.
/debraofamerica
/company/
debra-of-america
@debraofamerica
22%. The percentage of the
@wefighteb
debra.org/blog
$10,000. The average
monthly cost for EB patients to
acquire vital specialized
bandages. Many insurance
companies do not cover the full
cost of these bandages.
ullosa
R esearch
6. The number of surgeries a
children born with EB in the
United States in 2014,
who passed away.
ystrophic
the worst
disease you’ve
75 Broad Street, Suite 300
New York, NY 10004
(212) 868-1573
[email protected]
debra.org
debra is a 501(c)(3) nonprofit organization. Contributions are deductible
to the fullest extent allowed by law. Tax ID: 11-2519726
never heard of
what is Epidermolysis Bullosa (EB)?
A donation of
$100
will allow us to send
wound care supplies
to
EB families.
4
how you can help!
Make a Gift. A gift from you directly impacts EB
families. For more information about your gift’s impact and to
make a gift today, please visit: debra.org/give.
Attend or Host An Event. In addition to attending our
debra-hosted events, many of our supporters host their own
fundraisers to help raise EB Awareness. Interested? Our staff can
help guide you through every step of the process!
Join a Committee. Be part of the strategy that advocates
for the EB Community by joining one of
debra of America’s Committees.
what does debra do?
The Dystrophic Epidermolysis Bullosa
Research Association of America (debra
of America), founded in 1980, is the only
U.S. nonprofit providing all-inclusive
support to the EB Community, through
funding research for a cure and by
providing free Programs and
Services for those with EB. In 2015 alone,
debra of America and debra
International allocated more than
$4 million to research grants globally.
Volunteer. There are many ways to help us in the fight
against EB in your community!
For more information, visit debra.org.
Call: 212-868-1573
Email: [email protected]
Wound Care Distribution Program
Supplies are distributed to those who cannot afford
them. These specialized bandages can cost in
through our free Programs & Services, we ...
Epidermolysis Bullosa (EB) - The Worst Disease You’ve Never Heard Of - is a rare
connective tissue disorder with many genetic and symptomatic variations. All forms of
EB share the most well-known and prominent symptom of extremely fragile skin that
blisters and tears with any friction. The list of secondary complications can be long in
the more severe cases. There is no treatment or cure for EB, but researchers are making
tremendous strides in developing therapies. Until a cure is found, debra of America is
dedicated to providing daily support to those who suffer from EB.
Provide Wound Care.
excess of $10,000 per month.
Educate.
EB Nurse Educator Program
Our nurse is available by phone or email for EB
families, the public, and the professional community
to answer questions, refer doctors, and provide
guidance.
Spread Smiles.
Smile Fund
In partnership with Grace Peshkur’s family and
friends, debra of America grants mini-wishes for
people with EB. These smiles not only benefit the
Butterfly Child or Adult, but they also create
priceless memories.
Support Progress.
debra Care Conference (DCC)
A biennial conference where EB families come
together to share their experiences and learn from
clinicians and researchers who specialize in EB.
Welcome Families.
New Family Advocate Program
Wound care products and informational materials
are sent to all new EB families. An experienced
caregiver is available upon request for hands-on
training on how to care for someone with EB.
Fight For The EB Community.
Government Affairs & Legal Aid Program
debra of America works at all levels of government
to educate legislators about important laws,
regulations, and policies that will benefit those with
EB. Legal Aid is designed to help people with EB,
and their families, advocate for themselves when
issues arise.