Get Involved Archives - NORD (National Organization for Rare Disorders)

The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to take advantage of early bird pricing! Need more enticing?

Here are 10 reasons… Read More

March 20, 2019

TOPIC: Get Involved, Patients & Members, Sticky Posts for Homepage

Hear from NORD’s registry community

Posted at March 3, 2019 11:03 am by Christina Jensen

During the 2018 Rare Diseases & Orphan Products Breakthrough Summit, NORD spoke with its IAMRARE registry users to get their thoughts on how their patient registries are benefiting their communities and how they are able to use the data. See the videos below and on our Youtube channel here.

Read More</a></p> </div> <p class="post-tags">Tags: <a href="https://rarediseases.org/tag/iamrare-registry/" rel="tag">IAMRARE Registry</a>, <a href="https://rarediseases.org/tag/natural-history-studies/" rel="tag">natural history studies</a>, <a href="https://rarediseases.org/tag/patient-registry/" rel="tag">patient registry</a>, <a href="https://rarediseases.org/tag/rare-disease-research/" rel="tag">Rare disease research</a></p> </article> <article id="post-38639" class="post-38639 post type-post status-publish format-standard hentry category-advocacy category-featured-news category-get-involved tag-fda tag-house-of-representatives tag-oda tag-orphan-drug-act tag-orphan-drug-act-of-1983 tag-orphan-drug-act-resolution tag-peter-l-saltonstall tag-representative-bilirakis tag-representative-butterfield"> <h4>March 18, 2019</h4> <p class="post-topics">TOPIC: <a href="https://rarediseases.org/category/advocacy/" rel="category tag">Advocacy</a>, <a href="https://rarediseases.org/category/featured-news/" rel="category tag">Featured News</a>, <a href="https://rarediseases.org/category/get-involved/" rel="category tag">Get Involved</a></p> <h3 class="post-title"> <a href="https://rarediseases.org/orphan-drug-act-resolution-introduced-in-the-house-of-representatives/" title="Permalink to Orphan Drug Act Resolution Introduced in the House of Representatives" rel="bookmark"> Orphan Drug Act Resolution Introduced in the House of Representatives </a> </h3> <h6 class="post-posted">Posted at March 3, 2019 04:05 pm by Christina Jensen</h6> <div class="content-box clearfix"> <p>Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.</p> <p>Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to the ODA’s enactment in 1983, only 34 therapies for… <a href="https://rarediseases.org/orphan-drug-act-resolution-introduced-in-the-house-of-representatives/" class="read_more">Read More</a></p> </div> <p class="post-tags">Tags: <a href="https://rarediseases.org/tag/fda/" rel="tag">FDA</a>, <a href="https://rarediseases.org/tag/house-of-representatives/" rel="tag">House of Representatives</a>, <a href="https://rarediseases.org/tag/oda/" rel="tag">ODA</a>, <a href="https://rarediseases.org/tag/orphan-drug-act/" rel="tag">Orphan Drug Act</a>, <a href="https://rarediseases.org/tag/orphan-drug-act-of-1983/" rel="tag">Orphan Drug Act of 1983</a>, <a href="https://rarediseases.org/tag/orphan-drug-act-resolution/" rel="tag">Orphan Drug Act Resolution</a>, <a href="https://rarediseases.org/tag/peter-l-saltonstall/" rel="tag">Peter L. Saltonstall</a>, <a href="https://rarediseases.org/tag/representative-bilirakis/" rel="tag">Representative Bilirakis</a>, <a href="https://rarediseases.org/tag/representative-butterfield/" rel="tag">Representative Butterfield</a></p> </article> <article id="post-38493" class="post-38493 post type-post status-publish format-standard has-post-thumbnail hentry category-event category-featured-news category-get-involved category-patient-stories category-patients-members category-rare-disease-day category-sticky-posts-for-homepage tag-rarediseaseday tag-showyourstripes tag-bustle tag-cbs-news tag-change-together tag-eurordis tag-ky3 tag-living-rare-living-stronger-forum tag-mediaplanet tag-nih tag-patient-voice tag-phrma tag-rare-disease-day tag-rddnih tag-show-your-stripes tag-show-your-stripes-challenge tag-voice-of-america"> <h4>March 6, 2019</h4> <p class="post-topics">TOPIC: <a href="https://rarediseases.org/category/event/" rel="category tag">Events</a>, <a href="https://rarediseases.org/category/featured-news/" rel="category tag">Featured News</a>, <a href="https://rarediseases.org/category/get-involved/" rel="category tag">Get Involved</a>, <a href="https://rarediseases.org/category/patient-stories/" rel="category tag">Patient Stories</a>, <a href="https://rarediseases.org/category/patients-members/" rel="category tag">Patients & Members</a>, <a href="https://rarediseases.org/category/rare-disease-day/" rel="category tag">Rare Disease Day</a>, <a href="https://rarediseases.org/category/sticky-posts-for-homepage/" rel="category tag">Sticky Posts for Homepage</a></p> <h3 class="post-title"> <a href="https://rarediseases.org/rare-disease-day-2019-notes-successes/" title="Permalink to Rare Disease Day 2019 Notes and Successes" rel="bookmark"> Rare Disease Day 2019 Notes and Successes </a> </h3> <h6 class="post-posted">Posted at March 3, 2019 04:38 pm by Christina Jensen</h6> <div class="content-box clearfix"> <img width="240" height="206" src="https://rarediseases.org/wp-content/uploads/2019/01/Show-Your-Stripes-Feat-Image.png" class="attachment-post-thumbnail size-post-thumbnail wp-post-image" alt="" /> <p>This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud to say that Rare Disease Day 2019 was a… <a href="https://rarediseases.org/rare-disease-day-2019-notes-successes/" class="read_more">Read More</a></p> </div> <p class="post-tags">Tags: <a href="https://rarediseases.org/tag/rarediseaseday/" rel="tag">#RareDiseaseDay</a>, <a href="https://rarediseases.org/tag/showyourstripes/" rel="tag">#ShowYourStripes</a>, <a href="https://rarediseases.org/tag/bustle/" rel="tag">Bustle</a>, <a href="https://rarediseases.org/tag/cbs-news/" rel="tag">CBS News</a>, <a href="https://rarediseases.org/tag/change-together/" rel="tag">Change Together</a>, <a href="https://rarediseases.org/tag/eurordis/" rel="tag">eurordis</a>, <a href="https://rarediseases.org/tag/ky3/" rel="tag">KY3</a>, <a href="https://rarediseases.org/tag/living-rare-living-stronger-forum/" rel="tag">Living Rare Living stronger Forum</a>, <a href="https://rarediseases.org/tag/mediaplanet/" rel="tag">MediaPlanet</a>, <a href="https://rarediseases.org/tag/nih/" rel="tag">NIH</a>, <a href="https://rarediseases.org/tag/patient-voice/" rel="tag">Patient Voice</a>, <a href="https://rarediseases.org/tag/phrma/" rel="tag">PhRMA</a>, <a href="https://rarediseases.org/tag/rare-disease-day/" rel="tag">Rare Disease Day</a>, <a href="https://rarediseases.org/tag/rddnih/" rel="tag">RDDNIH</a>, <a href="https://rarediseases.org/tag/show-your-stripes/" rel="tag">Show Your Stripes</a>, <a href="https://rarediseases.org/tag/show-your-stripes-challenge/" rel="tag">Show Your Stripes Challenge</a>, <a href="https://rarediseases.org/tag/voice-of-america/" rel="tag">Voice of America</a></p> </article> <article id="post-37476" class="post-37476 post type-post status-publish format-standard hentry category-advocacy category-get-involved category-patient-stories category-rare-disease-day tag-familiesscn2a-foundation tag-rare-disease-day tag-rdd19-story tag-scn2a-disorder"> <h4>February 26, 2019</h4> <p class="post-topics">TOPIC: <a href="https://rarediseases.org/category/advocacy/" rel="category tag">Advocacy</a>, <a href="https://rarediseases.org/category/get-involved/" rel="category tag">Get Involved</a>, <a href="https://rarediseases.org/category/patient-stories/" rel="category tag">Patient Stories</a>, <a href="https://rarediseases.org/category/rare-disease-day/" rel="category tag">Rare Disease Day</a></p> <h3 class="post-title"> <a href="https://rarediseases.org/bens-story-in-honor-of-rare-disease-day/" title="Permalink to Ben’s Story in Honor of Rare Disease Day" rel="bookmark"> Ben’s Story in Honor of Rare Disease Day </a> </h3> <h6 class="post-posted">Posted at February 2, 2019 09:45 am by Christina Jensen</h6> <div class="content-box clearfix"> <p style="text-align: center;"><i>The following story was submitted by Leah Schust in honor of Rare Disease Day. In this story, Leah shares her family’s journey of searching for and receiving a diagnosis for their son, Ben, of SCN2A Disorder.</i></p> <p style="text-align: center;"><a href="https://rarediseases.org/shareyourstory/"><i>Share your story for Rare Disease Day here.</i></a></p> <hr /> <p>Benjamin, known to all who love him as Ben, is an adorable… <a href="https://rarediseases.org/bens-story-in-honor-of-rare-disease-day/" class="read_more">Read More</a></p> </div> <p class="post-tags">Tags: <a href="https://rarediseases.org/tag/familiesscn2a-foundation/" rel="tag">FamiliesSCN2A Foundation</a>, <a href="https://rarediseases.org/tag/rare-disease-day/" rel="tag">Rare Disease Day</a>, <a href="https://rarediseases.org/tag/rdd19-story/" rel="tag">RDD19 Story</a>, <a href="https://rarediseases.org/tag/scn2a-disorder/" rel="tag">SCN2A Disorder</a></p> </article> <ul class='pagination'> <li><span aria-current='page' class='pagination current'>1</span></li> <li><a class='pagination' href='https://rarediseases.org/category/get-involved/page/2/'>2</a></li> <li><a class='pagination' href='https://rarediseases.org/category/get-involved/page/3/'>3</a></li> <li><span class="pagination dots">…</span></li> <li><a class='pagination' href='https://rarediseases.org/category/get-involved/page/21/'>21</a></li> <li><a class="next pagination" href="https://rarediseases.org/category/get-involved/page/2/">Next ></a></li> </ul> </div> <div class="col-lg-4 col-md-4 col-sm-4 col-xs-12 sidebar"> <div id="blog-topics"> <h3>Topics</h3> <div class="topic-set"> <a href="https://rarediseases.org/category/patients-members"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top1.png" alt="icon"> </span> Patients & Members </a> <a href="https://rarediseases.org/category/research"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-2.png" alt="icon"> </span> Research </a> <a href="https://rarediseases.org/category/advocacy"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-3.png" alt="icon"> </span> Advocacy </a> <a href="https://rarediseases.org/category/industry"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-4.png" alt="icon"> </span> Industry </a> <a href="https://rarediseases.org/category/medical"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-5.png" alt="icon"> </span> Medical </a> <a href="https://rarediseases.org/category/featured-news"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-6.png" alt="icon"> </span> Featured News </a> <a href="https://rarediseases.org/category/press-releases"> <span class="icon-box"> <img src="https://rarediseases.org/wp-content/uploads/2014/12/top-7.png" alt="icon"> </span> Press Releases </a> </div> </div>  <aside id="tp_widget_recent_tweets-4" class="widget widget_tp_widget_recent_tweets"><h5>Tweets From NORD</h5> <div class="tp_recent_tweets"> <ul><li><span>The <a href="https://twitter.com/search?q=LivingRareForum" title="Search #LivingRareForum" target="_blank" >#LivingRareForum</a> is going to be a great experience for medical professionals & students too! Invite your doctor… <a href="https://t.co/be08dvZXc0" target="_blank">https://t.co/be08dvZXc0</a></span><a class="twitter_time" target="_blank" href="http://twitter.com/rarediseases/statuses/1118641556322430976">11 hours ago</a></li><li><span><a href="https://twitter.com/search?q=ICYMI" title="Search #ICYMI" target="_blank" >#ICYMI</a>: <a href="https://twitter.com/search?q=NORD" title="Search #NORD" target="_blank" >#NORD</a> published a new report in its <a href="https://twitter.com/search?q=RareDisease" title="Search #RareDisease" target="_blank" >#RareDisease</a> Database on Primary Distal Renal Tubular Acidosis. Learn m… <a href="https://t.co/2kpyvO6by4" target="_blank">https://t.co/2kpyvO6by4</a></span><a class="twitter_time" target="_blank" href="http://twitter.com/rarediseases/statuses/1118615136963629057">13 hours ago</a></li><li><span>There is an urgent need for AFM funding. 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April 9, 2019

Living Rare, Living Stronger full agenda with speakers now available

Posted at April 4, 2019 08:52 am by Christina Jensen

March 20, 2019

Hear from NORD’s registry community

Posted at March 3, 2019 11:03 am by Christina Jensen