Please visit EB Info World 
To learn more about EB

EPIDERMOLYSIS BULLOSA
HEALTH CARE SUPPLIES
(An information-gathering exercise to compile a state-by-state database)

A BIG Thank You to those that submitted their answers to this Questionnaire. The details we gathered have been used to produce an up-to-date snapshot illustrating how wound care supplies are used across the country, and how families in the EB community cope with the expense.

We have compiled the information on a state-by-state basis, and published it on this website. We will use the information to establish average costs for families in each state, and to reach out to the U.S. government and demand assistance for families in the EB community? until there is a CURE. This will go along with the Petition. Once we have enough signatures to support our efforts, and with the help of legislators across the country, we will be able to present the Wound Care Bill to Congress. 

Thank you in advance for participating and providing this information. Please read our Privacy Policy and be assured that only general, appropriate information will be publicized, and no participants will be identified.

PLEASE NOTE: Since this is a U.S. specific survey, please DO NOT fill this out if you live outside of the USA. Thank You!

Your email address
Your Full Name
Mailing Address (your contact information is crucial in case we need to contact you if we have additional questions)
Phone Number
1. What U.S. state do you live in?
2. Who in your immediate family has Epidermolysis Bullosa?
3. If you know the subtype of EB, please indicate here:
4. What is the age (or what are the ages) of those affected by EB?
5. Please answer YES or NO about adding you to our ?How to Help? list, which would allow you to receive EBAN newsletters and occasional updates and request for help in signing petitions and the like.	YES NO I have already signed up
6. Do you have health insurance?	YES NO
6a. If the answer is NO, please explain how you manage EB-related wound care and other expenses here:
7. If the answer is YES, we realize there are many types. Please tell us what kind you have, i.e., HMO, PPO, POS, Open Access, Medicare, Medicaid, state program and/or other. Provide all details, including the name of the company, percentage paid, whether a co-payment is required, whether the company pays the entire bill or just a portion, and whether there is a ?cap? on expenses. Please indicate whether your physicians have been of assistance in your reimbursement, and if so, what they did to help. Also, please indicate whether you have a secondary insurance, and if so, provide details about the coverage:
8. Is your health insurance through work? Through your own business? Or other? Are there income requirements? How much is your premium?
9. Does your insurance cover ALL of the bandages, supplies and medications you, or your child, are on that are specifically related to EB? In general, please list what it's covered.
10. Are there some supplies related to EB that the insurance does not pay for?  Please tell us what:
11. What additional items do you buy over-the-counter for your, or your child?s, condition? Please list them in general, whether they are bandages; pain relievers; antibiotic ointments; eye gel, ointment, drops; dietary supplements, etc.
12. Please state your approximate monthly outlay for EB-related health care supplies, and, if you are able, to, let us know of any challenges you may have faced due to a lack of financial assistance to pay for your supplies!:
13. Would you like to write a testimonial for us to post on this website on the importance of the Wound Care Bill to be passed? If so, tell us why you think the Bill being passed will help you personally, financially:
14. Thank you very much for taking part and providing information for our database! EBAN was created by the families? for the families!!! If you have any other information that might be pertinent, or other EB-related challenges you wish to tell us about, please add it here:

Please do not submit false or empty forms, THANK YOU! 

Copyright ? Epidermolysis Bullosa Action Network