New MDS survey...

[riccd2001]

The Aplastic Anemia and MDS International Foundation is conducting an online research survey for MDS patients/caregivers. Check it out and take part if you want. Celgene is indirectly involved.

http://www.aamds.org/staying-treatment

The survey seems to be open to all, but to complete the survey you will need a ZIP code (e.g., 14020 -Batavia N.Y.)

[Rosemary]

I did the survey and was nearly finished, but it would not accept my Canadian postal code. So I just put in a series of numbers, (ended up a New York address!) so I could finish it off. I did call and tell someone at AAMDSIF about the fact there was no provision for non-US postal codes. Hope they do something about it.

[Birgitta-A]

Hi Rosemary,
I had the same problem from Sweden - I ended up with a New york adress too.
Kind regards
Birgitta-A

[BerryP]

If you are a UK patient don't waste your time trying to fill it in. I have sat here for 15 mins filling it in until it would not let me past the zip code question because surprise surprise we in the UK do not have zip codes!

It might be a good idea for an international survey to be set up instead of an America wide one. Good luck anyway BerryP

[slip up 2]

just phoned, they are going to try and fix the problem...

[JackieKallenbach]

Hi,

This is Jackie from AA&MDSIF. Thank you for trying to participate in this survey and letting us know of the postal code problem. We do value your responses so we encourage you to take the survey again and use "12345" (this is a New York zip code) as the zip code. We apologize for the inconvenience and thank you for your support.

If you have any questions about the survey, please contact Jean Logan by email at logan@aamds.org or by phone at (301) 279-7202, Ext. 114.

[squirrellypoo]

Originally Posted by JackieKallenbach

We do value your responses so we encourage you to take the survey again and use "12345" (this is a New York zip code) as the zip code.

Thanks for posting this, Jackie. I'm in the UK so I wouldn't have filled it out had I seen this.

I found it a bit strange that the survey was so focused on people stopping treatment while they're still ill - plenty of us stop treatment because we're healthy again and don't need it anymore!