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What am I doing wrong?


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#1 Sooty30

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Posted 26 May 2012 - 12:05 AM

I keep trying to join the scleroderma society but as soon as I put all my information in online all that comes up is record not saved. I can't download it as I only use an iPad and don't have a printer.

I tried last week as well with no luck I wanted to see if we could claim our accommodation expenses back as we had to stay in an hotel twice with having to be on ward early to start ritixmab. I read on their site that they can help with covering accomodation expenses as a result of treatment in hospital.

Now I am getting frustrated as surely the longer it takes to join I may not be able to try to claim it back. What am I doing wrong or is it just the site?

#2 Joelf

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Posted 26 May 2012 - 05:01 AM

Hi Sooty,

I've PM'ed you.

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#3 Shelley Ensz

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Posted 30 May 2012 - 05:23 PM

Hi Sooty,

I'm sure Jo helped you and hope your issue is resolved by now.

One handy thing to do whenever your computer acts up with any website, especially an interactive one like our forums or any site registration procedure or shopping excursion, is to make certain that your browser is set to "Accept Cookies" from the site in question. Cookies function as a short-term memory, so they remember who you are, what page you are on, what page you want to go back to, etc.

So whether or not that was the issue you encountered, always remember the Cookie Trick! Many of us don't turn off Cookies ourselves; they can be automatically turned off by antivirus-type software or by other people who use our computer, so even very savvy computer users can get tripped up by broken cookies.

Did you get the matter cleared up okay?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Sooty30

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Posted 31 May 2012 - 02:40 PM

No still not sorted. Been up to the Royal Free again so to be honest I haven't tried. I will try again soon. My mind is frazzled at the moment after filling out disability forms and we are only on about page 12 :)

#5 Amanda Thorpe

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Posted 02 June 2012 - 02:48 PM

Hello Sooty

When completing the disability forms make sure you talk about your husband's WORST day not his best. This is what my mother was advised to do, it's what I did. The DWP take into account people's good days when considering terminating benefit so the reverse applies when applying for it. DO NOT be British about it and understate anything however small, you are not lying nor are you exaggerating.

I wonder if there is a glitch with the Scleroderma Society's website, it being newly launched and all. If the "cookies" didn't work email Mike Rich (CEO) about it but I can't give you his email address and bizarrely it's not on the site? I have PM'd it to you instead, please let me know if no joy.

Take care.
Amanda Thorpe
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International Scleroderma Network (ISN)