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EB Database 

EB is a rare condition, and Drs are not always free to give out information about other parents or patients in the area or anywhere that might help because of different privacy laws. This is why a volunteer database from willing parents/patients was started in 2000.

To be added to the database so other families can find you, please fill out the form below. Please specify if you'd like to be added to the list where this database is downloaded once a month.

If you've already filled out this form and you simply need to EDIT some of the information, DO NOT fill out this form again, simply contact me and on the body of the message include the full name of the patient with the information do edit, such as:
Nicholas Zahorcak
Residence: Arizona - please change to California

Q. I was wondering if this information is protected in some way.

A. The only people that can join the list where the database is downloaded is only those that are also members of the database or have requested to join, who also have EB, have a child with EB or are otherwise involved with an EB patient in some way, shape or form (grandparent, aunt, sibling etc). I (the webmaster) am the one that approves/deny memberships and, as I stated in the paragraph for the group, those that want to join the list need to tell me who they are or they are denied membership. The database per se is not otherwise available to the general public. The only information you give is your name (last name not necessary), state or country where you live (specific addresses are not listed at all and not requested) the form of EB you have, and a mean to contact you, either a phone number or an email address. That is all the database includes. It would be IMPOSSIBLE for anyone to google your name and get this information, or for anyone to 'accidentally' find it, as the info is protected and only members of the database can see it. If you want to further protect yourself, you may list yourself without a last name.

Thank you!

*****

Fill out this form to be added to the EB database.
Please Note: Only one entry per family unit. If more than one person in the family has EB, simply combine the information in each line. Thanks!!

Patient's full Name (First name first please, then LAST. Middle name not necessary):

Form of EB (Please be as specific as possible if you know it-for example, if Dystrophic, please state Recessive Dystrophic-Hallopeau Siemens. Names are categorized by form of EB, so this is important):


P.S. If you are awaiting the results of a biopsy, it's best to wait for the results before filling out this form with 'unknown' form of EB - Thank You.

Year of birth of Patient (full date of birth not necessary):

Email address:

Is the email address the parent's?

If Yes, please fill out parent's name/s below

Parent's name/s (if not parent but other relative, please precede the name with relationship such as aunt, wife, grandmother or other):

State or Country of Residence (names will also be categorized by residence so new parents can find someone to talk to in their language and locality who might know Drs, the laws and services available in the area):

Would you like to be able to be contacted via phone? If so, please enter your phone #

Additional info you would like to add, such as if patient died w/date of death, special circumstances, second language spoken etc.(optional):

Would you like us to add you to the mailing list where the database is downloaded once a month? (if so, make sure you posted your email address above)


Please Note: Submissions that do not include both phone number and an email address (one or the either is required) will be ignored because they defeat the purpose of the database. Thank you!
The webmaster only updates the database once a week, your patience is appreciated. Thank you!

 

*****

If you do not want to share your info but would like to have the database downloaded every month, or if you are in the database but not part of the list, subscribe by going to the following URL:

http://health.groups.yahoo.com/group/ebdatabase/

Because we want to keep this database available to only other EB families and friends, make sure to either state in the box provided when registering how you know an EB patient (if you are not a patient yourself) or why you want to join. We do this to secure the families belonging to the database.


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