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What would you like to see changed or added to the NATT website?
#Response DateResponse Text
1May 16, 2009 10:24 PMnew clinical trials
2May 17, 2009 11:03 PMMake it more appealing, inviting, exciting
3May 18, 2009 12:41 AM1. Better (more detailed) info on what is happening within specific chapters; 2. Webinars for patients, 3. Well-structured Q/A; 3. More newsletters on specific topics (Military and Blood Clots; psychological and social impact of having had a blood clots; cancer and blood clots; unusual clotting disorders); 4. More NATT brochures on specific topics (protein C deficiency; protein S deficiency; homozygous factor V Leiden;athletes and blood clots; INR home monitors); 5. a map of the U.S. depicting healthcare providers (hematologists) knowledgeable about clots and clotting disorders; 6. take everything that is good on www.fvleiden.org and have similar content on NATT's website ("First diagnosed - what you need to know"; medical alert bracelets with links how to buy them; etc); 7. A page for NATT-National and NATT chapters listing all subcommittees, describing what they do and what kind of volunteers they are looking for, so that people can kind-of sign up; 8. Picture and brief bio on all NATT staff members - National staff and chapter staff, so that it is not such an anonymous organization; 8. A "History of NATT" , describing NATT's first 5 years of existence (the ups and downs, challenges, progress), pictures included, so that one gets a better and more personal feeling of what NATT and its members are; 9. Full transparency about the finances, what gets done with money raised, so that people are willing to support NATT and know what gets done with their money; 10. Description on the individual chapter pages as to who the steering committee members are (pictures included), where and when they meet; what subcommittees they have and who leads them; contact info so that one can express interest to serve on a subcommittee; information about what happens with money donated within a chapter and how to earmark it for chapter purposes. Thank you for having asked.
4May 18, 2009 3:21 AMTo see more up-to-date information about chapters and how to donate directly to them.
5May 18, 2009 12:57 PMmore video and more places to ask a question (ie at the bottom of each page) and not loose my place on the page
6May 18, 2009 1:06 PMToo much written text. Need to make more user friendly, probably different pages for health care providers and patients.
7May 18, 2009 9:11 PMDifferent opening topic headers..i.e. education..patient info.
8May 18, 2009 10:11 PMmore information on specific blood clotting disorders
9May 19, 2009 2:38 PM-------
10May 19, 2009 2:42 PMmore information about treatment
11May 19, 2009 3:01 PMmore stories from people who have clotted, or who's children have had clots
12May 19, 2009 3:22 PMI can see it is well funded and perhaps too funded in the current year. I hope money is being saved for future years as the public and government interest will not always be there and the site will need funds in those eyears as well. It seems like there is a lot of money thrown at it right now. we can do a lot without money and with the gatherings. thank you for all you do.
13May 19, 2009 3:29 PMNo suggesstions at this time
14May 19, 2009 3:37 PMA separate link for healthcare personnal.
15May 19, 2009 5:22 PMMaybe a bit more detail about Vitamin K foods, like a link to a more complete list of foods. I have bookmarked a couple of sources, such as about.com's calorie counter and nutritiondata.com. Mostly, though, I think the information provided here is pretty complete.
16May 19, 2009 5:49 PMa support group maybe
17May 19, 2009 5:55 PMPlease find a way that I can forward certain sections to my children who also have thrombophilia. Thank you.
18May 19, 2009 6:05 PMTh blinking red arrow is horribly distracting and made me scroll down so I would not see it. There is a lot of info on the homepage. It is a bit too much. I would focus on keeping the important items above the fold and for sure lose that blinking red arrow. I would add a forum or a blog so that readers can get involved in the conversations. Users could get engaged in sharing with the patients stories
19May 19, 2009 6:51 PMmore natural treatment options
20May 19, 2009 6:56 PMThe site is a bit busy and sometimes without the search box it is hard to find things. Overall, I am happy with it. It would be nice to have Podcasts on more topics.
21May 19, 2009 7:35 PMkeep up the great work
22May 19, 2009 7:45 PMblood testing for clotting factorsfor everyone getting surgery
23May 19, 2009 9:38 PMthere is only a small visuallt difeference between regular text and links - links should be more distinct - yes, they become become more visible if you roll-over them....but why would you roll-over if you couldn't see they were links? just a minimal bold isn't enough.
24May 20, 2009 1:03 AMnone
25May 20, 2009 1:13 AMEverything is fine!
26May 20, 2009 1:34 AMI would like to start a support group in Cleveland or help with a seminar.
27May 20, 2009 2:02 AMA Question & Answer Foram, where we ciuld pose questions of concers to a panel of experts in the field.
28May 20, 2009 2:37 AMMore information on factor V lieden
29May 20, 2009 5:07 AMnone
30May 20, 2009 11:13 AMtechnical information made easier for the lay person to understand.
31May 20, 2009 2:25 PMChanges: There is a lot of written information on the website. There can be more bullet point messages and less detailed paragraphs. Add: Visual aids are great tools. Webinars - Personal stories of volunteers.
32May 20, 2009 6:36 PMI think the home page should be shorter. It seems the organization is trying to put too much on the home page of things that are in other sections. The navigation is good so you don't seem to need all the news stories.
33May 20, 2009 8:52 PMyou need more pictures
34May 21, 2009 12:12 PMnot sure
35May 21, 2009 1:19 PMIt needs to be more attractive. The upcoming events should be more prominent.
36May 21, 2009 2:43 PMI think NATT's message needs to be more clear. I think NATTs moto should be "Know your risk factors and get tested."
37May 21, 2009 5:35 PMMore events promoting awareness
38May 21, 2009 6:02 PMI think it needs to be more interactive. Forums would be great - a better way to connect to the community. More updates about what the organization is doing, meeting recaps, ways to get involved, calls to action, etc. There are some other great health organization web sites that are wonderful - MS Society, etc.
39May 21, 2009 8:56 PMThe NATT news feed should have the date news items were added, more links on the different educational pages to sites for more info on that specific topic, the typewriter picture on the home page seems out of date, maybe less info on the home page as you ahve to scroll to see it all use more links instead
40May 22, 2009 1:17 AMGood as is
41May 22, 2009 1:34 AMI would love to see a forum/blog for people to share personal stories and respond back and forth.
42May 22, 2009 4:30 PMNothing
43May 22, 2009 5:51 PMI think the site has a good foundation and now needs to fill out information and links. There needs to be more in-depth information as well as personal experiences - video testimonials, etc.
44May 23, 2009 12:01 PMmore international info Nictotine replacement therapy e.g. gum as a risk factor not just smoking more about this
45May 23, 2009 6:01 PMI would like to see more medical graphics for DVT and pulmonary embolism. A cutaway graphic would be nice.
46May 24, 2009 3:59 PMNothing I can think of.
47May 24, 2009 7:32 PMQ,: Being on warferin for three years what specific tests are needed to get me off? More importantly is needed gallbladder surgery possible? Chateract surgery? More dangerous?
48May 25, 2009 3:46 AMNothing
49May 26, 2009 2:29 PMI think it's well done. I think these sites fail when they are not maintained.
50May 27, 2009 6:56 AMThe format needs work. It still looks amateurish-half of some pages are still blank. The Chapter information needs to be consistent and more uniform. Someone needs to make sure that the information (e.g. dates of Stop the Clot Forums) is correct and updated frequently. Some of the articles presented have some age on them: for instance, the article on Air Travel. While the information contained may still be valid, a reader who sees that the article is five years old may expect more recent information, lose confidence and stop reading. It may also color their perception of the website or organization, if they encounter other "dated" (in their eyes) information.
51May 27, 2009 7:21 AMmany peple around the globe, includig health care provider are unable to attend the seminars and meetings being held by the NATT. Therefore I suggest to bring such events as live show or recorded ones through the internet.
52May 27, 2009 11:44 PMclinical trials info
53Jun 5, 2009 4:29 PMI had a PE recently with unusual signs and symptoms - I had Pain in my Left arm, shoulder and neck with pressure in my chest. I was diagnosed with a PE because of a very good PA in the ER and divine intervention. I don't see any of these symptoms listed on your site - I think it would be helpful if you could look into this and educate the people as well as physicians that sometimes the symptoms aren't written in stone - there are other signs and for the time it takes to do a lung CT - they can get an accurate diagnosis. Thank you!
54Jun 5, 2009 5:44 PMsection for healthcare professionals
55Jul 30, 2009 1:55 AMit seems to cover what is needed
56Aug 6, 2009 2:13 AMManagement of clotting before and after surgery, as Warfarin effect tapers off three days before and ramps up after restarting it.
57Aug 21, 2009 2:21 AMOther areas that are affected by the clotting disorders, especially when combined Factor V Leiden AND MTHFR disorders. I started with migraines, elevated to TIAs developing into periventricular white matter, and now with mild cognitive impairment (an early dementia condition). Currently being treated with Plavix, Metoprolol, Folgard RX (Folic, B6, B12), & Namenda)
58Aug 22, 2009 2:50 PMPlease include a printable version of the information without all the ads and extraneous imformation.
59Aug 24, 2009 5:42 AMthis default survey should be abolished
60Aug 27, 2009 3:39 AMWould like to see more info regarding Post Phlebetic Syndrome, and possible treatment or learning to deal with it.
61Aug 28, 2009 6:47 PMI wish more states would offer support groups for this issue here in az there is 0.
62Sep 1, 2009 9:19 AMTretement of Disease
63Sep 7, 2009 11:47 AMMore info about athletes diagnosed with DVT and local support info/events
64Sep 13, 2009 5:50 PMnothing