“Alone we are rare. Together we are strong.”<br />Rare Disease Day 2/28/10Comments on: -- http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html because health professionals can't do it alone Sat, 11 Feb 2012 08:53:56 +0000 hourly 1 By: Blog for Rare, a success and follow-up! | The Children's Rare Disease Network http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-51186 Blog for Rare, a success and follow-up! | The Children's Rare Disease Network Sat, 27 Feb 2010 15:02:05 +0000 http://e-patients.net/?p=4868#comment-51186 [...] ePatients (ePatient Dave) [...] [...] ePatients (ePatient Dave) [...]

]]> By: Brian Loew http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-51146 Brian Loew Fri, 26 Feb 2010 18:46:59 +0000 http://e-patients.net/?p=4868#comment-51146 In collaboration with NORD, we just completed a survey of Inspire members with rare disorders in recognition of Rare Disease Day. Here are some highlights: Of the 554 respondents, - 68% have a rare disorder, and 32% are caregivers. - 81% are female, and 19% are male. - The average age is 47, and the median age is 48. - 41% reported that their doctors are not knowledgable or barely knowledgable about their disorder. - 58% said that they are receiving treatments that are moderately or highly effective. - 37% are not sure if there are FDA-approved treatments for their rare conditions - 45% are not sure if there are off-label treatments for their rare conditions - 22% first met another person with their condition through the Inspire community. - 58% said that being a member of the Inspire community has improved their health. - 41% were not previously familiar with Rare Disease Day. To read the complete results of the survey, visit this page: https://www.inspire.com/survey/rare-disease-day-2010/group/rare-disease/results/ For more information about the survey methodology, please contact me or email research@inspire.com In collaboration with NORD, we just completed a survey of Inspire members with rare disorders in recognition of Rare Disease Day.

Here are some highlights: Of the 554 respondents,

- 68% have a rare disorder, and 32% are caregivers.
- 81% are female, and 19% are male.
- The average age is 47, and the median age is 48.

- 41% reported that their doctors are not knowledgable or barely knowledgable about their disorder.
- 58% said that they are receiving treatments that are moderately or highly effective.

- 37% are not sure if there are FDA-approved treatments for their rare conditions
- 45% are not sure if there are off-label treatments for their rare conditions

- 22% first met another person with their condition through the Inspire community.
- 58% said that being a member of the Inspire community has improved their health.

- 41% were not previously familiar with Rare Disease Day.

To read the complete results of the survey, visit this page:

https://www.inspire.com/survey/rare-disease-day-2010/group/rare-disease/results/

For more information about the survey methodology, please contact me or email research@inspire.com

]]> By: Joanne Borek http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-55928 Joanne Borek Wed, 24 Feb 2010 22:09:54 +0000 http://e-patients.net/?p=4868#comment-55928 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Wouldn't "Rare Disease Day" be more appropriate for 2/29? Just saying... http://bit.ly/adQLAC #pharma @ePatientDave</span></span> Wouldn't "Rare Disease Day" be more appropriate for 2/29? Just saying… http://bit.ly/adQLAC #pharma @ePatientDave

]]> By: SusannahFox http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-51096 SusannahFox Tue, 23 Feb 2010 19:16:01 +0000 http://e-patients.net/?p=4868#comment-51096 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT @sirenwendy "Alone we are rare. Together we are strong." Rare Disease Day 2/28/10 http://is.gd/8U91e</span></span> RT @sirenwendy "Alone we are rare. Together we are strong." Rare Disease Day 2/28/10 http://is.gd/8U91e

]]> By: ePatientDave http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-51076 ePatientDave Mon, 22 Feb 2010 08:56:20 +0000 http://e-patients.net/?p=4868#comment-51076 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">The long tail of diseae: @SirenWendy on e-patients.net "Alone we are rare. Together we are strong." Rare Disease Day http://is.gd/8Uaaj</span></span> The long tail of diseae: @SirenWendy on e-patients.net "Alone we are rare. Together we are strong." Rare Disease Day http://is.gd/8Uaaj

]]> By: IFTF Health Horizons http://e-patients.net/archives/2010/02/alone-we-are-rare-together-we-are-strong-rare-disease-day-22810.html/comment-page-1#comment-55929 IFTF Health Horizons Mon, 22 Feb 2010 05:20:16 +0000 http://e-patients.net/?p=4868#comment-55929 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT @ePatientDave: The long tail of diseae: @SirenWendy on e-patients.net "Alone we are rare. Together we are strong." Rare Disease Day http://is.gd/8Uaaj</span></span> RT @ePatientDave: The long tail of diseae: @SirenWendy on e-patients.net "Alone we are rare. Together we are strong." Rare Disease Day http://is.gd/8Uaaj

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