Purpose of the Program
The "Quality of
Life" Program was designed to help EB families that require specific and immediate help with either bandages or other products that enhance the life of an EB patient, such as medical procedures, wheelchair ramps, door handles, wheelchairs, special shoes and such.
Due to the number of applications we (will) receive, we cannot help everyone. Decisions are based upon several factors, including:
(1) medical urgency
(2) financial need
(3) available funding
(4) eligibility.
Eligibility Guidelines
The applicant (person applying) must:
(1) Be a patient with EB-Epidermolysis Bullosa or be a family member or friend seeking assistance for an
EB patient.
(2) Demonstrate financial need.
(3) Submit a completed application.
(4) Provide EBAN with updates and photos if we are able to help.
Resources
Before you apply, you should
know there are many state resources to help pay for various things
needed by EB families. EBAN cannot accept applications that require
assistance in paying things such as rent, mortgage, car payments and such,
hence here's a list of some we've found, more to
come:
1. WAP: Weatherization
Assistance Program - The U.S. Department of Energy’s
Weatherization Assistance Program (WAP) reduces heating and cooling
costs for low-income families, particularly for the elderly, people with
disabilities, and children, by improving the energy efficiency of their homes while ensuring their health and safety.For
state contacts click
here
.
2. Pro
Bono & Public Service
3. State
and Local Resources - From the DisabilityInfo.gov
website
4. State
Pharmaceutical Assistance Programs - Includes seniors,
disabled, uninsured and others.
5. Patient/Drug
Assistance Programs:
Partnership for Prescription Assistance - www.pparx.org
RxAssist: Accessing Pharmaceutical Patient Assistance Programs - www.rxassist.org
RxHope: The Heart of the Pharmaceutical Industry - www.rxhope.com
TogetherRX - http://www.togetherrxaccess.com/Tx/jsp/home.jsp
6. The National Financial
Resources Guidebook for Patients: A State by State
Directory of information for patients seeking financial relief for a
broad range of needs including housing, utilities, food, transportation
to medical treatment, and children's resources.
7.
RECEIVE HELP FOR FOOD, BILLS, CLOTHING ETC..
http://modestneeds.org/
8.
YOUR LOCAL SALVATION ARMY
http://www.salvationarmy.org
9.
Alliance Foundation
The Alliance Foundation is a
non-profit organization whose mission is to provide relief for children
and their families affected by disasters in the United
States.
http://www.alliance-consulting.com/foundation/
10. American
Public Human Services Association
Internet site that list
social service agencies by state
http://www.aphsa.org/links/statecontacts.asp
11. Feeding
Children Better
Do you find yourself having to choose
between rent and food? Not eligible for food stamps? This site lists
food banks throughout the USA if you click on the "get help"
button.
http://www.feedingchildrenbetter.org
12. Food
Assistance Links
There is at least one listing for each
state and the site will be updated regularly.
http://www.geocities.com/queenesperfect
13. Giving @
Home
A giving board website with links by
category.
http://www.givingboard.com/
14. Giving
Board
Whether you are in need yourself or wanting to help
others, this is the place to be! Giving isn't limited to monetary help.
Words of encouragement, prayers and the ability to give others hope are
equally important. We invite you to become part of our "family", whether
it is as a lurker or by chatting and letting us get to know you
better.
http://www.angelfire.com/pro/givingboardangels/GB_Request_Lists_Home.html
15.
Government Assistance For Low Income Individuals And Families. Many
links by State.
(http://www.geocities.com/spetite_oh/assistance.html
16. Guidestar:
children
List of organizations by state that provide
supplies and clothing for children.
http://www.guidestar.org/news/features/table_school.stm
17. Guidestar:
utilities
List of organizations by state that provide help
with utilities.
http://www.guidestar.org/news/featur...utilities.html
18. Heartland
Share
This is a program in several states which allows
people to buy $25-30
worth of groceries for a small fee plus
community service hours.
http://www.heartlandshare.com
19.
Information and Referral Resource Network
Provides directory
information and links to sites on the Internet for Human Services and
associated information and referral, Health and Medical Services,
Disease Centers and Reports, Prescription Drug products and Reference
material, Community Health and Outreach programs and published
information on these subjects.
http://www.ir-net.com/
20. Listing of
local food banks
This website will give a listing of food
banks in your state. It is very helpful, even if your income is too high
for federal food help the local food banks will help.
http://SecondHarvest.org
21. Low Income
Home Energy Assistance Program
LIHEAP is a Federally-funded
program that helps low-income households with their home energy bills.
LIHEAP can help you stay warm in the winter and cool in the
summer.
http://www.acf.dhhs.gov/programs/liheap/
22. Newborns
in Need Inc.
Help with baby clothes and other
items.
http://www.newbornsinneed.org/
23. Salvation
Army
They offer utility bill assistance, emergency food
pantry/vouchers, emergency financial assistance, general health
screening and assessment, medical referrals and access to medical
treatment.
http://www.usc.salvationarmy.org
24. Special
Needs Phone Book & Crisis Guide
Extensive list of
resources for all kinds of needs, some with links, but all with contact
information. Listed alphabetically by category. Select Moody's Directory
in the Consumer Resources column.
http://www.efmoody.com
25. Telephone
bill assistance info
Provides helpful information for US
citizens about applying for grants for lowering your phone bill. Must be
low income.
http://lifelinesupport.org
26. U.S.
Department of Energy Utility Assistance
This federal program
assists with utility payments for persons that have income up to 150% of
the federal poverty guidlines.(currently 11,540.00 for a one person
household). In most states you can qualify for assistance 2 times a
year.
http://www.eren.doe.gov/
27. Women
Children Family Service Charities of America
Phone:
1-800-626-6481 WCFS is a coalition comprised of many of America's finest
charitable organizations dedicated to meeting the needs of women,
children, and families in America and around the world. Our members
provide real solutions to real problems, and act as a force for change
with law and policy makers.
http://www.womenandchildren.org
28.
ANGEL TREE - HELPS FAMILIES AT CHRISTMAS WHO MAY HAVE A SPOUSE IN
PRISON
http://www.angeltree.org/site_hmpg.asp
29.
THE TIDINGS.COM
http://www.the-tidings.com/2004/1224/adoptfam.htm
Apply
Click on the link below
EBAN Quality of Life Application
