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~Questions & Answers about EB Info World~

Through the years of running this website I've been asked questions about this website and many people wondered about stuff and assumed the wrong thing. I will add to this list regularly when new questions or misconceptions arise.

Here are the most common ones in an effort to educate everyone about this website. Please note... I am posting most of these questions verbatim, exactly as they were asked.

Q. How did this website come about?

A. You may read about the history of EB Info World on this page. To make a long story short, EB info corner went from one single page in 1997 to what it is today gradually, as my HTML skills improved. My aim was always to help other parents, by putting whatever info about the condition on the net. My son has the Recessive Dystrophic form of EB and he's the inspiration for this site and its content.

Q. Why make this kind of website? What's the need?

A. When my son was born in 1996, there was nothing out there for new parents. I could not find any info on the Internet at all. I posted on newsgroups trying to find other parents to no avail. It wasn't until my son was one year old that I was able to meet a few other parents at the EB Clinic at Stanford. This website is not here for any other reason but to make sure other parents find each other and are able to network with one another and get some good information on how to take care of their kids. 

This website also serves as a portal to reach any and all EB organizations and websites out there. I link to all the major EB organizations on every page of this website and in the appropriate links page I link to personal and other organizations that support EB patients in any way, shape or form. By visiting this site, you will be able to find the info you need, no matter where you live or what you're looking for. If you do not, please contact me, I am always open to suggestions!

Q. How can anyone submit information to be added?

A. Anyone is welcome to add their article, pictures or information to this website. This website is made by contributions from parents or patients and they are encouraged! More details are posted usually on the page itself, but if you have any questions, you may contact me here.

Q. How often is this website updated?

A. The website is updated once a month over a few day's time, depending on how much time I have available. The newsletter is posted every other month.

Q. Why aren't certain information or news added to the newsletter or site?

A. There is only one of me! If I am not aware of a certain news item I cannot post it. Sometimes even very obvious news slip through my fingers. If you think a certain news item should be on this website or posted on the next newsletter, you may tell me by contacting me here.

Q. I was reading a page and I found some inaccurate information. Can it be changed?

A. Of course! Since this entire website it's a one-woman-show, I can always use a hand in catching mistakes here and there. Contact me here and let me know! 
One word of caution though. If the information you catch that is inaccurate or outdated is about an EB patient or EB family per se, the only person that can contact me to have it changed is the person that submitted the information. So... this means that, say, you see that a patient on the Children or Adults with EB patients has maybe passed away and you think should be moved to the memorials... I cannot do that unless the family contacts me directly and tells me to do so. It's their information, and I respect their wishes. Perhaps you may want to contact the family and have them contact me about the changes. Thanks for understanding. 

Q. What can I do to help?

A. I would love some help! Just contact me here and let me know if you have any html experience or what you would like to do to help maintain this website! THANK YOU!

Q. I've noticed that other EB websites have blatantly copied graphics or content of this website for their own EB website. How do you feel about that? Doesn't that make you angry?

A. Not at all! Copying is the most sincere form of flattery, isn't it? Plus, the more EB websites out there, the better! We need awareness, awareness and more awareness. 

Q. For what reason articles, pictures, or anything else may be taken off the website?

A. Anyone may request, at any time, any information that they submitted, to be taken off this website, and I will do so at the next monthly update. 

If and when I take articles or pictures or anything submitted off this website that was not requested to be taken off, I only ever do it for MY protection. It's important for everyone to understand that nobody that submits information to be added to this website has to sign any release, so I have no 'right' nor 'own' the information submitted. I am not an organization, I am just a mom, but anyone that might have malicious intent can and will hurt not only me but jeopardize the very existence of this website. 

How so? 

A few years ago someone wrote to the server of ebinfoworld.com and told them that I had the picture of her daughter and her email address on the website without HER CONSENT and the server, in turn, gave me 48 hours to take it off or they would shut my website down. Thankfully I wasn't out of town or unable to access my website, or all my hard work would have been ERASED!! I put nearly a decade of work on this website and it could all vanish in a blink! Can you imagine? 

Ever since that happened, I've had to think defensively. I have no other choice. If I am caught trusting someone I shouldn't have, this website could be history. Therefore, if I feel anyone scares me enough into thinking they might do a similar thing (there are lots of scary and crazy people in this world-and these individuals usually have done something in particular that has scared me), I can and will take their information down to protect not only myself but the existence of this website. 

Thankfully, this happens rarely. How rarely? I can count on one hand the specific individuals that I had to take the information they submitted off this website for the reasons explained above in the past decade. Considering I have hundreds of pictures and info on this website about EB families, this number is extremely small. That's because the vast majority of EB families are brilliant and some of the most wonderful human beings you would ever hope to meet. My best friends are other moms with children with RDEB. Taking things off this website it's definitely not something I want nor like to do. I love EB families, and I only want this website to grow, and help more and more people, not get smaller. 

Everyone needs to understand that I have a duty to protect this website, and I will do so for as long as I can. I have put too much work, blood, sweat and tears into this website for it to be ruined by a few with malicious or vindictive intent. Hopefully someone, somewhere, will thank me for that.

 

   

 


How lovely to think that no one needs wait a moment, we can start now, start slowly changing the world!
--Anne Frank



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EB Info World was Created on 11/20/1997 
Last Updated: October 10, 2006
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