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</head> <body lang=EN-US link=blue vlink=purple style='tab-interval:.5in'> <div class=WordSection1> <p class=MsoNormal style='margin-left:120.0pt;text-indent:-120.0pt;tab-stops: 120.0pt;mso-layout-grid-align:none;text-autospace:none'><b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>From:<span style='mso-tab-count:1'>                              </span></span></b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>NORD [orphan@rarediseases.org]<o:p></o:p></span></p> <p class=MsoNormal style='margin-left:120.0pt;text-indent:-120.0pt;tab-stops: 120.0pt;mso-layout-grid-align:none;text-autospace:none'><b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>Sent:<span style='mso-tab-count:1'>                               </span></span></b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>Friday, February 25, 2011 3:10 PM<o:p></o:p></span></p> <p class=MsoNormal style='margin-left:120.0pt;text-indent:-120.0pt;tab-stops: 120.0pt;mso-layout-grid-align:none;text-autospace:none'><b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>To:<span style='mso-tab-count:1'>                                   </span></span></b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>nnpdf@nnpdf.org<o:p></o:p></span></p> <p class=MsoNormal style='margin-left:120.0pt;text-indent:-120.0pt;tab-stops: 120.0pt;mso-layout-grid-align:none;text-autospace:none'><b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>Subject:<span style='mso-tab-count:1'>                          </span></span></b><span style='font-family:"Calibri","sans-serif";mso-bidi-font-family:Calibri; color:black'>Rare Disease Day 2011 is Almost Here!<o:p></o:p></span></p> <p class=MsoNormal><o:p>&nbsp;</o:p></p> <div style='margin-left:15.0pt;margin-top:15.0pt;margin-right:15.0pt' id=banner> <h1 align=center style='text-align:center;background:white'><span style='font-size:21.0pt;font-family:"Helvetica","sans-serif";mso-fareast-font-family: "Times New Roman";color:#109AC6'><img width=300 height=100 id="_x0000_i1025" src="http://i1.cmail4.com/ti/r/62/240/A9A/090455/csimport/new_nord_banner_0.jpg" border=0><o:p></o:p></span></h1> <h1 align=center style='text-align:center;background:white'><span style='font-size:21.0pt;font-family:"Helvetica","sans-serif";mso-fareast-font-family: "Times New Roman";color:#109AC6'>&nbsp;Rare Disease Day Partner<o:p></o:p></span></h1> </div> <div style='margin-left:15.0pt;margin-top:15.0pt;margin-right:15.0pt; margin-bottom:30.0pt'> <h2 style='margin:0in;margin-bottom:.0001pt;background:#3C6895'><span style='font-size:12.0pt;font-family:"Helvetica","sans-serif";mso-fareast-font-family: "Times New Roman";color:white'><img width=100 height=67 id="_x0000_i1026" src="http://i2.cmail4.com/ti/r/62/240/A9A/090455/csimport/rdd_logo-bg_1.jpg" border=0><a name=A95A9BA4C0E6B29C></a>What Will You Do for Rare Disease Day 2011?<o:p></o:p></span></h2> <p><span style='font-family:"Helvetica","sans-serif"'>Rare Disease Day 2011 will be here soon, and the groundswell of activity has been truly phenomenal!&nbsp; Here are a few highlights:<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l1 level1 lfo1;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>The U.S. Senate has approved with unanimous consent a resolution designating Feb. 28, 2011, Rare Disease Day throughout the U.S.&nbsp; This resolution was sponsored by Senator Sherrod Brown (D-OH) and co-sponsored by Senator John Barrasso (R-WY).&nbsp; If you live in Ohio or Wyoming, be sure to thank your senators for this.<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l1 level1 lfo1;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>We have an unprecedented number of state proclamations this year.&nbsp; NORD extends a huge thank-you to all who helped with this, and a special shout-out to Kelli Foster and others in the Mastokids.org group for their amazing efforts!<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l1 level1 lfo1;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>There are more than 500 Rare Disease Day Partners for 2011!&nbsp; This illustrates the strong collaboration among patients and families and those who are dedicated to assisting them.&nbsp; See the <a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/r">list of Partners</a> on the Rare Disease Day US website.<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l1 level1 lfo1;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>NIH Director Francis Collins will speak at the <a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/y">NIH Rare Disease Day event</a> on Monday.&nbsp; Speakers representing the patient community will be NORD President and CEO Peter L. Saltonstall and Genetic Alliance President and CEO Sharon Terry.<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l1 level1 lfo1;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>Events submitted through the Rare Disease Day US website are listed state-by-state.&nbsp; <a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/j">See what's happening</a> in your state.<o:p></o:p></span></p> <p align=center style='text-align:center'><span style='font-family:"Helvetica","sans-serif"'><a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/t" target="_blank"><span style='text-decoration:none;text-underline:none'><img border=0 width=383 height=264 id="_x0000_i1027" src="http://rarediseaseday.us/images/usa-map-rdd-2011.png"></span></a><o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l0 level1 lfo2;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>FDA is hosting a &quot;Do A Designation&quot; workshop at the Keck Graduate Institute in California on Feb. 28 and March 1.<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l0 level1 lfo2;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>NORD will be continuing its &quot;Video Library&quot; project to create 1- or 2-minute videos describing as many rare diseases as possible.&nbsp; For each video posted, Alnylam Pharmaceuticals will donate $10 to NORD to support education on all rare diseases.&nbsp; In addition, Donate Games has donated an XBOX 360 Elite Bundle and other prizes to be raffled off to a few lucky individuals who submit videos.<o:p></o:p></span></p> <p class=MsoNormal style='mso-margin-top-alt:auto;margin-right:15.0pt; mso-margin-bottom-alt:auto;margin-left:15.0pt;text-indent:-.25in;line-height: 18.0pt;mso-list:l0 level1 lfo2;tab-stops:list .5in'><![if !supportLists]><span style='font-size:10.0pt;mso-bidi-font-size:10.5pt;font-family:Symbol; mso-fareast-font-family:Symbol;mso-bidi-font-family:Symbol'><span style='mso-list:Ignore'>·<span style='font:7.0pt "Times New Roman"'>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span></span></span><![endif]><span style='font-size:10.5pt;font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'>Still not sure what to do on Rare Disease Day?&nbsp; Tell at least three other people about the rare disease of interest to you and how it impacts daily life.&nbsp; If you participate in Facebook, consider changing your profile photo to the Rare Disease Day logo for that day.<o:p></o:p></span></p> <p><strong><span style='font-family:"Helvetica","sans-serif";color:purple'>Thank you for your support!</span></strong><span style='font-family:"Helvetica","sans-serif"'><o:p></o:p></span></p> <p><span style='font-family:"Helvetica","sans-serif"'>NORD is grateful to everyone who, in any way, has provided support for Rare Disease Day 2011.&nbsp; This has been the best year ever, and it's all because so many people find creative ways to participate, no matter where they are or how few resources may be available to them.<o:p></o:p></span></p> <p><span style='font-family:"Helvetica","sans-serif"'>For the complete overview of Rare Disease Day events in the U.S., go to the site hosted by NORD at <a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/i">www.rarediseaseday.us</a>.<o:p></o:p></span></p> <p><span style='font-family:"Helvetica","sans-serif"'>And don't forget to visit the global Rare Disease Day site hosted by EURORDIS at <a href="http://nordenews.cmail4.com/t/r/l/ykuhsy/ydtdtyjry/d">www.rarediseaseday.org</a>.<o:p></o:p></span></p> <p><span style='font-family:"Helvetica","sans-serif"'>We'll keep the US website active after Rare Disease Day.&nbsp; Next year will be a leap year, and that means that Rare Disease Day 2012 will fall on February 29th, the ultimate rare day.&nbsp; Be sure to check the website periodically through the year to see about plans for that special Rare Disease Day!<o:p></o:p></span></p> </div> <div style='margin-left:15.0pt;margin-top:15.0pt;margin-right:15.0pt; margin-bottom:15.0pt' id=footer> <p align=center style='text-align:center;background:#3C6895'><span style='font-size:9.0pt;font-family:"Helvetica","sans-serif";color:white'>You are receiving this because the email address <a href="mailto:nnpdf@nnpdf.org">nnpdf@nnpdf.org</a> was subscribed to our email list.<br> <a href="http://nordenews.cmail4.com/t/r/u/ykuhsy/ydtdtyjry/"><span style='color:#DDDDDD'>Unsubscribe</span></a> from this newsletter.<o:p></o:p></span></p> <p align=center style='text-align:center;background:#3C6895'><span style='font-size:9.0pt;font-family:"Helvetica","sans-serif";color:white'>© 2011 NORD, National Organization for Rare Disorders<br> 55 Kenosia Ave., Danbury CT 06813&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Tel: 1-800-999-NORD<o:p></o:p></span></p> </div> <p class=MsoNormal><span style='font-family:"Helvetica","sans-serif"; mso-fareast-font-family:"Times New Roman"'><img border=0 width=1 height=1 id="_x0000_i1028" src="https://cmail4.com/t/r/o/ykuhsy/ydtdtyjry/o.gif" style='border-bottom-width:0in;border-left-width:0in;border-right-width:0in; border-top-width:0in;height:1px;margin-bottom:0in;margin-left:0in;margin-right: 0in;margin-top:0in;padding-bottom:0in;padding-left:0in;padding-right:0in; padding-top:0in;width:1px'><o:p></o:p></span></p> </div> </body> </html>