tag:blogger.com,1999:blog-34955311428424462392024-03-08T14:08:43.851-05:00My Normal | storytelling for rare disease healthMy Normal | storytelling for rare disease health
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-3495531142842446239.post-66947151195182362682017-11-03T08:42:00.000-04:002018-03-19T08:58:52.529-04:00Gaucher Portraits<div class="separator" style="clear: both; text-align: center;">
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The Gaucher Community Gallery was created at the <a href="http://gauchercanada.ca/" target="_blank">National Gaucher Foundation of Canada</a>'s 25th Anniversary Conference. Thank you to everyone who participated & helped raise awareness about the Gaucher family!<br />
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<b>Visit <a href="https://www.instagram.com/gaucherportraits/" target="_blank">gaucherportraits</a> on Instagram to see more from our conference art making station. </b>In the anniversary edition of the <a href="https://mailchi.mp/ac43c44e23c5/celebrating-25-years-with-the-ngf-canada" target="_blank">NGF Newsletter</a> you can also read about impressions of the conference from our community.My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com1tag:blogger.com,1999:blog-3495531142842446239.post-48114373239047152742016-10-31T19:03:00.000-04:002016-10-31T19:03:56.009-04:00Skeletons at My Desk<div style="text-align: left;">
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Can an engaged patient be scared?</h3>
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Why learning about advancing research into Gaucher disease and Parkinson's has left me feeling vulnerable and what I'm doing to empower myself. </div>
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For an introduction to Gaucher disease read <i><a href="https://www.genome.gov/21519714/" target="_blank">Gaucher Disease: Opening a Window Into More Common Disorders</a> </i>from<i> </i>the <a href="https://www.genome.gov/" target="_blank">NIH's National Human Genome Research Institute</a>.<br />
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Thank you to the <a href="http://medicinex.stanford.edu/" target="_blank">Medicine X</a> conference presenters who got me thinking about science and the role patients can play in moving research forward. <a href="https://twitter.com/corrie_painter" target="_blank">Corrie Painter</a> you're an inspiration!</h4>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-28001526592461271302016-10-17T20:00:00.002-04:002016-10-17T20:00:26.576-04:00Being a Rare Disease ePatient at MedXLast month I attended the <a href="http://medicinex.stanford.edu/" target="_blank">Stanford Medicine X</a> conference, on scholarship, as an ePatient delegate. I've since had the chance to speak with Daniel Levine, on RARECast, about my experience, and conference topics of interest to the rare disease community. <br />
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<iframe frameborder="no" height="166" scrolling="no" src="https://w.soundcloud.com/player/?url=https%3A//api.soundcloud.com/tracks/287345051&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false" width="100%"></iframe>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-23782755627433789432016-06-02T08:20:00.000-04:002016-06-02T08:20:12.007-04:00The Challenge of Blogging While Sick<div class="separator" style="clear: both; text-align: center;">
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<i><span style="font-family: Georgia, Times New Roman, serif;">Writing while sick isn't a cup of tea in bed</span></i></div>
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Find the latest edition of the <i><a href="https://globalgenes.org/raredaily/running-on-stories-a-different-kind-of-marathon/" target="_blank"><b>Running on Stories</b></a></i> series at the RAREDaily by Global Genes. Join the discussion on Twitter with the <a href="https://twitter.com/search?f=tweets&vertical=default&q=%23RunningOnStories&src=typd&lang=en" target="_blank"><b>#RunningOnStories</b> </a>hashtag.<br />
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<b>What tips can you share for overcoming your barriers to blogging with chronic health? </b></div>
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com8tag:blogger.com,1999:blog-3495531142842446239.post-9115760496184119792016-05-23T04:27:00.000-04:002016-05-23T04:27:46.562-04:00Essay Contest Pays Tribute to Genetic Counselors<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dosfjsNx0KLcGVY08KfrMXhg3NDveNNplbW0gmNuQgY4A12iHoTj3o82thV3GBXHvPzR-V1tY84BooVyRnr-iXEhDNmeXR4QoQAzyyko7B4qTeYbTeHs0xBScMnZVWjw9ovvXg8QoYI/s1600/Genome.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dosfjsNx0KLcGVY08KfrMXhg3NDveNNplbW0gmNuQgY4A12iHoTj3o82thV3GBXHvPzR-V1tY84BooVyRnr-iXEhDNmeXR4QoQAzyyko7B4qTeYbTeHs0xBScMnZVWjw9ovvXg8QoYI/s200/Genome.png" width="200" /></a><b>Announcement: </b><a href="http://genomemag.com/" target="_blank">Genome</a> magazine is excited to partner with the <a href="http://nsgc.org/" target="_blank">National Society of Genetic Counselors</a> (NSGC) in the inaugural <b><a href="http://genomemag.com/codetalker/?utm_source=newsletter&utm_medium=email&utm_campaign=May2016" target="_blank">Code Talker Award</a></b> — an essay contest for patients and their families to honor a genetic counselor who has left a lasting impact on them. Three essay finalists and the genetic counselors they nominated will win a trip to NSGC’s annual education conference, held September 28 through October 1, 2016, in Seattle, Washington, where the award will be presented.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnaKDFB0j-SkBZk-C5rpzuDrxi0jnHCsPzhZ0olacZJmg5CL-ZdzlNcjWH16tuvcdnMRe0-jDU2wHQ12RKgcWOiB46DH-XvjEAkuLef-U32ywxGeCXl-7sxiY52XdHWZXAkOWeRR3JSz8/s1600/NSGC.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="90" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnaKDFB0j-SkBZk-C5rpzuDrxi0jnHCsPzhZ0olacZJmg5CL-ZdzlNcjWH16tuvcdnMRe0-jDU2wHQ12RKgcWOiB46DH-XvjEAkuLef-U32ywxGeCXl-7sxiY52XdHWZXAkOWeRR3JSz8/s200/NSGC.png" width="200" /></a>This is your chance to help celebrate the compassion, expertise, and helpfulness a genetic counselor has given to you, your family, or a close relative.<br />
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Find-out more and submit your story at the <a href="http://genomemag.com/codetalker/?utm_source=newsletter&utm_medium=email&utm_campaign=May2016" target="_blank"><b>Code Talker</b></a> website.<br />
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com3tag:blogger.com,1999:blog-3495531142842446239.post-61232187969723501892016-05-07T11:35:00.000-04:002016-05-07T15:31:10.990-04:00Essay Contest for Medical Students<div class="separator" style="clear: both; text-align: justify;">
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<tr><td class="tr-caption" style="text-align: center;"><b><a href="https://globalgenes.org/wp-content/uploads/2016/02/2016-Cox-Prize-Flyer.pdf" target="_blank"><span style="font-size: small;">Download flyer</span></a></b></td></tr>
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<b>Announcement:</b> <a href="https://globalgenes.org/" target="_blank">Global Genes</a>™ is proud to partner with Students Advocates for Neglected Diseases (<a href="http://www.studentadvocates.org/" target="_blank">STAND</a>) to present the third <b>David R. Cox Prize for Rare Compassion</b>, an essay program that connects medical students with the rare patient community. Visit Global Genes to find out how to <b><a href="https://globalgenes.org/coxprize/" target="_blank"><span style="font-size: large;">get involved</span></a></b>.<br />
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<br />My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com75tag:blogger.com,1999:blog-3495531142842446239.post-55107584519080839892016-04-20T10:02:00.000-04:002016-05-11T16:22:00.457-04:00Where to Promote Your Patient Story<div class="separator" style="clear: both; text-align: center;">
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We have a tendency to think bigger is always better. So we end up putting our attention on getting the most views possible rather than directly targeting the people who could benefit from our story or using our story to effect change. At the end of the day, a large number of ‘likes’ on social media may not produce the results we are hoping for when we miss reaching key decision makers or those we set out to support.<br />
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Read the latest edition of the <i>Running on Stories</i> series, at the RAREDaily by Global Genes, for "<a href="https://globalgenes.org/raredaily/running-on-stories-3-ways-to-make-the-most-of-your-storytelling-wisdom/" target="_blank">3 Ways to Make the Most of Your Storytelling Wisdom</a>."My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com1tag:blogger.com,1999:blog-3495531142842446239.post-53767353505867673152016-04-14T06:37:00.005-04:002016-04-14T06:37:59.164-04:00Precision Love<span style="background-color: #fafafa; color: #6f6f6f; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 13px; line-height: 19px;">A LOVE LETTER TO MY DRUG | What I neglected to say for 19 years on enzyme replacement therapy (ERT)</span><br />
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Recording prepared for my <a href="http://medicinex.stanford.edu/" target="_blank">Stanford Medicine X</a> ePatient storyteller track application.My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com2tag:blogger.com,1999:blog-3495531142842446239.post-15436656253393134972016-03-11T06:00:00.000-05:002016-03-14T08:32:18.825-04:00Role Playing to Improve Access to Therapies <i>Simulation activities bring multi-stakeholders together at </i><b>#RareEU2016 </b><br />
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Y. le Cam opens <a href="https://twitter.com/hashtag/RareEU2016?src=hash">#RareEU2016</a> in Brussels. Excellent turnout, 300 committed to Orphan Products <a href="https://twitter.com/eurordis">@eurordis</a> <a href="https://twitter.com/vbottarelli">@vbottarelli</a> <a href="https://t.co/sXTjiHg07T">pic.twitter.com/sXTjiHg07T</a></div>
— RD-Action Policy (@RareDiseasesEU) <a href="https://twitter.com/RareDiseasesEU/status/702429737470320640">24 February 2016</a></blockquote>
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Rare Disease Day, which was started in 2008 by <a href="http://www.eurordis.org/" target="_blank">EURORDIS</a> (the European Organization for Rare Diseases), has grown to include <a href="http://www.rarediseaseday.org/" target="_blank">participation from around the world</a>. This year’s activities included a symposium in Brussels on <b>improving access to rare disease therapies</b>. While there are over 7,000 unique rare diseases identified, the vast majority of <b>rare disease patients face limited to no treatment options </b>and significant inequities in accessing care. In order to address these life threatening challenges, symposium organizers intentionally brought together stakeholders from diverse backgrounds, including patient leaders. The event focused on the European landscape but attracted a large number of representatives from outside the European Union. It has always been to the benefit of the rare disease community to collaborate globally and EURORDIS continues to lead the way, with events like the symposium and the recent launch of the <a href="http://www.eurordis.org/de/content/rare-diseases-international" target="_blank">Rare Diseases International</a> (RDI) global alliance. <br />
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The <b><a href="http://www.eurordis.org/publication/multi-stakeholder-symposium-improving-patient-access-rare-disease-therapies" target="_blank">Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies</a> </b>offered an inspiring lineup of speakers and panelists who eloquently highlighted best practices and broadened the understanding of what health technology assessment (HTA) means in action. Throughout the conference there were <b>repeated calls to ensure that patients remain at the centre</b> of developments and recognition that <b>patient stories are critical to making good decisions</b> in advancing therapies. The role of the Internet and new data management technologies were also promoted as key for gathering input from patients and increasing collaboration potential.<br />
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"It's important to look at <a href="https://twitter.com/hashtag/raredisease?src=hash">#raredisease</a> not only from the medical side but also from social side" <a href="https://twitter.com/V_Andriukaitis">@V_Andriukaitis</a> <a href="https://twitter.com/hashtag/RareEU2016?src=hash">#RareEU2016</a> <a href="https://twitter.com/eurordis">@eurordis</a></div>
— Raquel Castro (@castrorakel) <a href="https://twitter.com/castrorakel/status/702482095294312449">24 February 2016</a></blockquote>
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Right words aside, the inclusion of <b>simulation exercises is what brought the themes of the conference to life</b>. Role playing sessions involved all attendees and gave everyone the chance to practice working together on a challenge. Simulations also let participants take on roles different from the ones they are typically responsible for playing. I played the part of decision maker and got to evaluate pricing and reimbursement of health technologies on behalf of the public plan. It was <b>a real thrill to be given a voting button and a level of power I’m unaccustomed to</b> <b>as a patient</b>. At the same time, I also felt frustrated by the limited information I received to make important decisions and the time restraints placed on getting to a final decision.<br />
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<a href="https://twitter.com/RareDiseasesEU">@RareDiseasesEU</a> Indeed, putting ourselves in the shoes of payers is instructive and challenging ! <a href="https://twitter.com/hashtag/RareEU2016?src=hash">#RareEU2016</a> <a href="https://t.co/tzsayoZ2yK">https://t.co/tzsayoZ2yK</a></div>
— Valentina Bottarelli (@vbottarelli) <a href="https://twitter.com/vbottarelli/status/702826738670301185">25 February 2016</a></blockquote>
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Of course these scenarios were just games, but playing left me with <b>greater awareness of the quality of input needed from patients, to ensure decision makers can take this perspective properly into account</b>. I also thought a lot about how difficult it must be for decision makers, to open themselves, to listen to stories from patients, while knowing that they aren’t in a position to always vote in favour of what patients want and need. <b>My takeaway from the symposium was greater empathy, for ALL the different players, working to make access to rare disease therapies viable.</b> Patients should be at the centre but there are many voices that need to be heard, if we want to move forward together, to improve the lives of rare disease patients. <br />
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.<a href="https://twitter.com/avrilbdaly">@avrilbdaly</a> at <a href="https://twitter.com/hashtag/RareEU2016?src=hash">#RareEU2016</a> "Value of a medicine means something different to everyone, but we must keep in mind what is value for PATIENTS"</div>
— Rare Diseases Europe (@eurordis) <a href="https://twitter.com/eurordis/status/702860030752776192">25 February 2016</a></blockquote>
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If you missed the #RareEU2016 symposium, you can now <b><a href="https://www.youtube.com/watch?v=YM0t5caxWf8" target="_blank">watch the recording on YouTube</a></b>. You can also access the one hour webinar that was offered pre-symposium as a practical <b><a href="https://www.youtube.com/watch?v=4XpLjzuIvZE" target="_blank">introduction to health technology assessment (HTA)</a></b>. </div>
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com5tag:blogger.com,1999:blog-3495531142842446239.post-76883815610178835162016-02-29T09:12:00.000-05:002016-03-11T03:42:16.845-05:00A Story of Rare Disease Activists Celebrate the patient voice for Rare Disease Day with <a href="http://mashable.com/2016/02/29/rare-disease-activists/#ZbNEeNmtP05J" target="_blank"><b>perspectives from activists</b></a>, including My Normal founder Emma Rooney, on what it means to live with a rare disease and advocate on behalf of the community.<br />
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12 activists share what they want you to know about living with a rare disease <a href="https://t.co/P3Lk3ZDnxx">https://t.co/P3Lk3ZDnxx</a> <a href="https://t.co/GQE7YRnPdD">pic.twitter.com/GQE7YRnPdD</a></div>
— Mashable (@mashable) <a href="https://twitter.com/mashable/status/704293308458258432">29 February 2016</a></blockquote>
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com2tag:blogger.com,1999:blog-3495531142842446239.post-82040820275274352392016-02-18T07:21:00.000-05:002016-02-18T07:21:18.277-05:00Social Media RARE Toolkit Launch<br />
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The My Normal Project is pleased to announce the launch of the <i><b><a href="https://globalgenes.org/toolkits/how-to-promote-your-rare-disease-story-through-social-media/introduction/" target="_blank">How to Promote Your Rare Disease Story Through Social Media</a></b></i> RARE Toolkit. My Normal is a proud content provider for this <a href="https://globalgenes.org/" target="_blank">Global Genes</a> resource. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOVKMlTaEmsf1ZvCN7YbzrT17hFZEBYx-RGFps3auRv9ngExY7YZqQAAyupwezi2CPmArF978ECPAY2-divD_Rkeq7UHjs05AdxYY-gDe_oaUAZTgEyJ8vqsLamON2NLxgaEgGgV8-IA8/s1600/GG_toolkit_social+media+storytelling_021016_WEB.pdf.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOVKMlTaEmsf1ZvCN7YbzrT17hFZEBYx-RGFps3auRv9ngExY7YZqQAAyupwezi2CPmArF978ECPAY2-divD_Rkeq7UHjs05AdxYY-gDe_oaUAZTgEyJ8vqsLamON2NLxgaEgGgV8-IA8/s1600/GG_toolkit_social+media+storytelling_021016_WEB.pdf.png" /></a></div>
<span style="text-align: justify;">The new Toolkit complements the </span><a href="https://globalgenes.org/toolkits/storytelling-2/why/" style="text-align: justify;" target="_blank">Using Storytelling</a><span style="text-align: justify;"> title but goes one step further by helping storytellers bring greater awareness to their personal journeys by taking advantage of social media. This Toolkit focuses on the value, use, and practical application of social media to promote our stories and can be </span><a href="https://globalgenes.org/toolkits/how-to-promote-your-rare-disease-story-through-social-media/introduction/" style="text-align: justify;" target="_blank">viewed free online</a><span style="text-align: justify;"> and </span><a href="https://globalgenes.org/wp-content/uploads/2016/02/GG_toolkit_social-media-storytelling_021016_WEB.pdf" style="text-align: justify;" target="_blank">downloaded</a><span style="text-align: justify;">. </span>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-79731966148244391342016-02-16T09:28:00.003-05:002016-02-18T07:59:21.802-05:00Storify: Do stories change anything? <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPtnPhbr2Go_OYpTsSSyvEq751tDCpYmXCbQwZyNL7q1On9kiaV52MG-vhg85IsI3RALOoZG8ouqkVCElM9fr135uQGajE_5Ej2jDfYJevEDzW539gx5pWYhCPObQGRbxw9uzZTamK8FE/s1600/BLOG+Pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPtnPhbr2Go_OYpTsSSyvEq751tDCpYmXCbQwZyNL7q1On9kiaV52MG-vhg85IsI3RALOoZG8ouqkVCElM9fr135uQGajE_5Ej2jDfYJevEDzW539gx5pWYhCPObQGRbxw9uzZTamK8FE/s400/BLOG+Pic.jpg" width="400" /></a></div>
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If you missed taking part in the <b><a href="https://cyhealthcommunications.wordpress.com/2016/01/28/preparing-for-rarediseaseday-do-stories-change-anything/" target="_blank">February 3rd #hcsmca Twitter Chat</a></b> on <b>storytelling +</b> preparing for <b>Rare Disease Day</b>, or you're looking for a recap of the lively session, visit the <b><a href="https://storify.com/blumencasey/do-stories-change-anything" target="_blank"><span style="font-size: x-large;">event storify</span></a></b>. It offers a great capture of why patient stories are so important and some of the challenges we must overcome to guarantee we are making the most of what stories have to offer. You will also find links to a number of relevant resources shared by participants. <br />
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<a href="https://twitter.com/drpauldempsey">@drpauldempsey</a> 20 years ago, my story didn't matter, I was told what to do. I love the change now since I'm asked what I need next. <a href="https://twitter.com/hashtag/hcsmca?src=hash">#hcsmca</a></div>
— Martin R. Lemieux (@martin_lemieux) <a href="https://twitter.com/martin_lemieux/status/694957723604094976">February 3, 2016</a></blockquote>
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script>
Chat contributors fully embraced the topics up for discussion:<br />
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<ul>
<li><b>T1.</b> How do patient stories impact the rare disease community? </li>
</ul>
<ul>
<li><b>T2.</b> How can we better value patient stories and respond to the insights shared? </li>
</ul>
<ul>
<li><b>T3.</b> What benefits should patients look for from contributing their stories? </li>
</ul>
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<li><b>T4.</b> What stories are missing from the rare disease community and how can we encourage different voices?</li>
</ul>
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Full chat transcriptions also available from <a href="https://cyhealthcommunications.wordpress.com/hcsmca-archives/" target="_blank">#hcsmca</a> <br />
<i><a href="https://storify.com/blumencasey/do-stories-change-anything" target="_blank">Do stories change anything? #hcsmca storify</a></i>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-48756932751310679652016-02-10T08:42:00.000-05:002016-02-11T02:02:05.155-05:00Rare Disease Day Movie PickLess than 20 days to go, we're on countdown until <a href="http://www.rarediseaseday.org/article/about-rare-disease-day" target="_blank">Rare Disease Day 2016</a>. The <a href="http://www.rarediseaseday.org/videos" target="_blank"><b>2016 official video</b></a> has now been released and it reminds us that while the goal of Rare Disease Day is to draw awareness to the plight of people living with rare diseases, it's also an important time to celebrate the voices of the rare disease community. Don't miss this year's production starring pianist <a href="http://www.rarediseaseday.org/page/news/meet-elisa" target="_blank">Elisa</a>, who lives with Williams Syndrome, and her family. If you're searching for a movie for Valentine's Day, also look out for the French Canadian romantic film <i><a href="http://www.theglobeandmail.com/arts/film/film-reviews/gabrielle-unusual-kind-of-musical-hits-the-right-notes/article16261670/" target="_blank"><b>Gabrielle</b></a>. </i>The film's leading lady, Gabrielle Marion-Rivard, also lives with Williams and brings this rare story to the big screen with a charming performance. <br />
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<div style="text-align: center;">
<iframe allowfullscreen="" frameborder="0" height="266" src="https://www.youtube.com/embed/02zR9r-LOfQ?list=PLw82lJoP71WhRRUPnNeap9eYHB7qROv1A" width="473"></iframe></div>
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com3tag:blogger.com,1999:blog-3495531142842446239.post-17392356528457324532016-01-28T09:00:00.000-05:002016-01-30T04:40:39.659-05:00#hcsmca Twitter Chat: Do Stories Change Anything? <div style="text-align: justify;">
<span style="font-size: small;"><span style="color: #333333; font-family: "georgia" , "times new roman" , "times" , serif; line-height: 22px;"><i>Full story published on the blog for </i></span><span style="color: #333333; font-family: "georgia" , "times new roman" , "times" , serif;"><span style="line-height: 22px;"><i><a href="https://cyhealthcommunications.wordpress.com/2016/01/28/preparing-for-rarediseaseday-do-stories-change-anything/" target="_blank"><b>Health Care Social Media Canada</b> <b>(#hcsmca)</b></a></i></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtILMLM2yVZ21d5z7RQyfZk8Bj8mRCdArQo95zPUp8RehENY6uryCc0lX8Gt-R5-KyQ4pPUQOYwM9izi7hyu_KKfA0_riE_AiPBBmMliUbYYL-Ci9ySxIHrN-PWBl0DkzYiGWPiCLowA/s1600/twitter+poster_Feb+3+hcsmca.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" height="198" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtILMLM2yVZ21d5z7RQyfZk8Bj8mRCdArQo95zPUp8RehENY6uryCc0lX8Gt-R5-KyQ4pPUQOYwM9izi7hyu_KKfA0_riE_AiPBBmMliUbYYL-Ci9ySxIHrN-PWBl0DkzYiGWPiCLowA/s400/twitter+poster_Feb+3+hcsmca.png" title="Preparing for #RareDiseaseDay: Do stories change anything?" width="400" /></a></div>
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Join the <b><a href="https://cyhealthcommunications.wordpress.com/hcsmca/" target="_blank">#hcsmca</a></b> weekly chat on <strong>Wednesday, February 3<sup>rd</sup> </strong>at<strong> 1pm ET</strong> <em>(<a href="http://www.timeanddate.com/worldclock/converter.html" target="_blank">time zone converter</a>)</em> to discuss how stories can change things.</div>
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<strong>In the chat we will cover:</strong></div>
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<ul style="background-color: white; color: #333333; font-family: georgia, 'times new roman', times, serif; line-height: 22px; list-style: none; margin: 0px 0px 10px 10px; padding: 0px;">
<li style="background: url("about:blank") 0px 0.3em no-repeat; display: block; margin: 5px 0px 0px; padding: 0px 0px 0px 17px; text-align: justify;">T1. How do patient stories impact the rare disease community?</li>
<li style="background: url("about:blank") 0px 0.3em no-repeat; display: block; margin: 5px 0px 0px; padding: 0px 0px 0px 17px; text-align: justify;">T2. How can we better value patient stories and respond to the insights shared?</li>
<li style="background: url("about:blank") 0px 0.3em no-repeat; display: block; margin: 5px 0px 0px; padding: 0px 0px 0px 17px; text-align: justify;">T3. What benefits should patients look for from contributing their stories?</li>
<li style="background: url("about:blank") 0px 0.3em no-repeat; display: block; margin: 5px 0px 0px; padding: 0px 0px 0px 17px; text-align: justify;">T4. What stories are missing from the rare disease community and how can we encourage different voices?</li>
</ul>
<div style="text-align: justify;">
<span style="color: #333333; font-family: "georgia" , "times new roman" , "times" , serif;"><span style="line-height: 22px;">Learn more about this #hcsmca twitter chat: </span></span><b style="color: #333333; font-family: georgia, 'times new roman', times, serif; line-height: 22px;"><i><a href="https://cyhealthcommunications.wordpress.com/2016/01/28/preparing-for-rarediseaseday-do-stories-change-anything/" target="_blank">Preparing for #RareDiseaseDay: Do stories change anything?</a> </i></b><span style="color: #333333; font-family: "georgia" , "times new roman" , "times" , serif; line-height: 22px;">by Emma Rooney (</span><a href="http://blumencasey/" style="font-family: georgia, 'times new roman', times, serif; line-height: 22px;" target="_blank">@blumencasey)</a></div>
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com5tag:blogger.com,1999:blog-3495531142842446239.post-89085759917753154312016-01-20T02:30:00.000-05:002016-02-27T13:54:26.443-05:00Find Rare Disease Patient Stories<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP9w6F2tFqAEKdf8UcuVEmtnFMMcrSpyzHDh_PAmQa6PPO1Smrbp0ypg2-nSrG-Xr8xQVlUhaQp41cfM5U9unBx6rBc5Ay4J9CFT46ZNmY2a-VRe-YDAkJT-w5ZfsfcOzIKRZjoLIyFV0/s1600/rdd-logo-extsmall.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP9w6F2tFqAEKdf8UcuVEmtnFMMcrSpyzHDh_PAmQa6PPO1Smrbp0ypg2-nSrG-Xr8xQVlUhaQp41cfM5U9unBx6rBc5Ay4J9CFT46ZNmY2a-VRe-YDAkJT-w5ZfsfcOzIKRZjoLIyFV0/s1600/rdd-logo-extsmall.jpg" /></a></div>
We've started a list of <a href="http://list.ly/list/yLj-rare-disease-patient-stories" target="_blank">Rare Disease Patient Stories</a> from around the world. Help get ready for <a href="http://www.rarediseaseday.org/" target="_blank"><b>Rare Disease Day</b></a> by visiting the list and adding your suggestions.<br />
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<strong id="ly_wrap_yLj_t" style="display: block; margin: 10px 0 4px;"><a href="https://list.ly/list/yLj-rare-disease-patient-stories" target="_blank" title="Rare Disease Patient Stories"> Rare Disease Patient Stories</a></strong><script src="https://list.ly/plugin/show?list=yLj&layout=full&per_page=10&show_item_voting=false&show_item_comments=false&show_item_relist=false&show_item_layout=false&show_list_headline=false&show_list_description=false" type="text/javascript"></script><br />
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View more <a href="http://list.ly/" target="_blank">lists</a> from <a href="http://list.ly/blumencasey" target="_blank"> Emma Casey Rooney</a></div>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-20678211617440158872016-01-12T16:00:00.000-05:002016-03-11T03:41:36.440-05:00Hearing Pictures: Narrative Medicine Rounds with Positive ExposureEven without seeing any of Rick Guidotti's portraits, you'll be moved by hearing him talk about his photographic journey, from top fashion photographer to starting Positive Exposure, in order to move viewers to see beyond diagnosis. You can hear the lecture on iTunesU from <a href="http://www.narrativemedicine.org/rounds-past.html" target="_blank">Narrative Medicine Rounds</a>. Follow up listening with a visit to the <a href="http://positiveexposure.org/" target="_blank"><b>Positive Exposure</b></a> gallery to see if you can spot any of the photo images so beautifully described through Guidotti's storytelling.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipKJ32bTrC_bwU2HHVjZ9p1MS-uVC7qietVAy-tDQrH85DSECrVw3icWMNvDHup5hBUOXOCzA8xZcUpq3YDiWSjHvZj36OTv9LRGyD60x3YFYB1BFzWVwBMg7Z7gyxxnW-b42_swPrbh4/s1600/RareButReal2015.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipKJ32bTrC_bwU2HHVjZ9p1MS-uVC7qietVAy-tDQrH85DSECrVw3icWMNvDHup5hBUOXOCzA8xZcUpq3YDiWSjHvZj36OTv9LRGyD60x3YFYB1BFzWVwBMg7Z7gyxxnW-b42_swPrbh4/s320/RareButReal2015.jpg" style="cursor: move;" width="320" /></a>Guidotti also lent his support to <b><a href="http://www.eurordis.org/news/eurordis-photo-contest-2015-and-winners-are" target="_blank">#RareButReal2015</a> </b>as a judge for the EURORDIS Photo Contest. Be sure to check out the recently announced winners! You can also share your own <a href="http://www.rarediseaseday.org/tell-your-story" target="_blank">photo stories</a> for Rare Disease Day 2016.<br />
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-33654390086999559632016-01-06T06:00:00.000-05:002016-01-15T16:34:40.222-05:00Find Tips for Sharing Your Rare Disease Day Story<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievKejGnbVO_Ak790WB47IGukfP5RGLb2GQYFxcQJWoLPhHT9-MmERifrXRQrwS0AvjSVk-SAtzPI3qkPKVmgyzSC__46un8ojJQFUM45-dp7vu5ddCB8FEdR0x9j2qQxA7lgjxxqae_E/s1600/fb-banner.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="146" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEievKejGnbVO_Ak790WB47IGukfP5RGLb2GQYFxcQJWoLPhHT9-MmERifrXRQrwS0AvjSVk-SAtzPI3qkPKVmgyzSC__46un8ojJQFUM45-dp7vu5ddCB8FEdR0x9j2qQxA7lgjxxqae_E/s400/fb-banner.jpg" width="400" /></a></div>
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<a href="http://www.rarediseaseday.org/article/what-is-rare-disease-day" target="_blank"><b>Rare Disease Day</b></a> is coming up, <b>February 29th, 2016</b>. This is a great time of year to join together with others from the rare disease community all over the world and contribute your rare disease story of what it means to live with a rare disease. Fittingly, the theme for this year's event is <b>patient voice</b>. <br />
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If you are looking for <b>tips on how to share your story </b>with impact, especially using <b>social media </b>to spread your message, watch these two recent webinars:<br />
<ul>
<li><i><a href="https://globalgenes.org/wrddplanning2016/" target="_blank">RARE Webinar: World Rare Disease Day 2016 Planning</a></i> presented by Global Genes</li>
</ul>
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<li><i><a href="http://www.rarediseaseday.org/page/news/maximising-social-media-around-rare-disease-day" target="_blank">Maximising Social Media around Rare Disease Day</a> </i>presented by RareConnect, EURORDIS </li>
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<iframe allowfullscreen="" frameborder="0" height="266" src="https://www.youtube.com/embed/10Q5EY2lYzA" width="473"></iframe><br />
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You can contribute your story to the official <a href="http://www.rarediseaseday.org/tell-your-story" target="_blank"><b>Rare Disease Day Website</b></a> or visit the <a href="http://www.mynormal.ca/p/links.html" target="_blank"><b>My Normal Resources Page</b></a> for a full list of places to share your rare disease story online.</div>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-67969927531934468912015-12-17T15:26:00.000-05:002015-12-22T05:57:14.076-05:00Storytelling Tips - December 17<div id="ly_wrap_vkd" style="text-align: left;">
<span id="ly_wrap_vkd_t" style="display: block; margin: 10px 0 4px;"><strong id="ly_wrap_vkd_t" style="display: inline !important; margin: 10px 0px 4px;"><a href="https://list.ly/list/vkd-tips-for-sharing-your-patient-story-with-pharma" target="_blank" title="Tips for Sharing Your Patient Story with Pharma">Tips for Sharing Your Patient Story with Pharma</a></strong></span><script src="https://list.ly/plugin/show?list=vkd&layout=full&per_page=25" type="text/javascript"></script><br />
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View more <a href="http://list.ly/" target="_blank">lists</a> from <a href="http://list.ly/blumencasey" target="_blank"> Emma Casey Rooney</a></div>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-74170949476753215302015-12-16T06:00:00.000-05:002015-12-16T06:00:27.175-05:00Normally Rare<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghlis4sckDJyU7f6WPimsWUSNCtub6A222NyvlmoypF_VHgrjWM2bpVbSe954At5rLw-uxznvcjxf7sc37cJ0DxQI2x2qnQ97YA5QCWeGRagzO3htggFOaIVcsGTR2p6sBrJaAqr15n1c/s1600/Normally+Rare.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghlis4sckDJyU7f6WPimsWUSNCtub6A222NyvlmoypF_VHgrjWM2bpVbSe954At5rLw-uxznvcjxf7sc37cJ0DxQI2x2qnQ97YA5QCWeGRagzO3htggFOaIVcsGTR2p6sBrJaAqr15n1c/s320/Normally+Rare.png" width="320" /></a></div>
<blockquote class="twitter-tweet" lang="en-gb">
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24 things people with rare diseases wish others understood <a href="https://t.co/U4yX7beqV8">https://t.co/U4yX7beqV8</a> <a href="https://t.co/WiDCkag2Ax">pic.twitter.com/WiDCkag2Ax</a></div>
— The Mighty (@TheMightySite) <a href="https://twitter.com/TheMightySite/status/676990178804629504">December 16, 2015</a></blockquote>
Find more <b><a href="http://themighty.com/tag/rare-disease/" target="_blank">rare disease stories</a></b> at The Mighty. <br />
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-48439589912637110992015-12-11T06:00:00.000-05:002015-12-11T06:02:49.759-05:00Narrative Medicine: Why does this need a special name?<div>
<span style="background: white; font-size: 13.3333px; line-height: 15.3333px;"><span style="color: #333333; font-family: "arial" , sans-serif;">The New Yorker Cartoonist Benjamin Schwartz begins his talk on narrative medicine by asking the worthy question, "</span></span><span style="font-size: 13.3333px; line-height: 15.3333px;"><span style="color: #333333; font-family: "arial" , sans-serif;">Why is this a thing?" Watch him illustrate the value</span></span><span style="font-size: 13.3333px; line-height: 15.3333px;"><span style="color: #333333; font-family: "arial" , sans-serif;"> of story in healthcare with his </span></span><span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; font-size: 13.3333px; line-height: 15.3333px;"><a href="https://www.youtube.com/watch?v=5tik96NGM6A" target="_blank">Time=Lives Talk: <i>Creativity: Can storytelling shape the way we do medicine?</i></a> from <a href="http://www.fastercures.org/" target="_blank">FasterCures</a>.</span></div>
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<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; line-height: 15.3333px;"><b>"We need to know the whole story...taking advantage of tools like social media to actively engage, converse, and listen to the patients who are already telling their stories out there. And not just using these tools as a way to market to them."</b></span></blockquote>
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<span style="background-color: white; color: #333333; font-family: "arial" , sans-serif; line-height: 15.3333px;">-Benjamin Schwartz, </span><span style="color: #333333; font-family: "arial" , sans-serif; line-height: 15.3333px;"><a href="https://twitter.com/BentSchwartz" target="_blank">@BentSchwartz</a></span> </blockquote>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com6tag:blogger.com,1999:blog-3495531142842446239.post-63860189329553768312015-11-24T06:30:00.000-05:002015-11-24T06:30:04.233-05:00Get On the Map for Arts & Health Month<div class="separator" style="clear: both; text-align: center;">
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November is Arts & Health Month - <i>an internationally recognized month to celebrate and raise awareness about arts’ contributions to health, healing and wellbeing</i>. Visit <a href="http://www.artshealthnetwork.ca/content/arts-health-month" target="_blank">Arts Health Network Canada</a> to learn more and get involved. My Normal is proud to be part of <a href="http://artshealthnetwork.ca/arts-health-map" style="font-weight: bold;" target="_blank">Mapping Arts & Health Across Canada</a><b> </b>presented by AHNC. Is your initiative on the map? <br />
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-31744555652173102802015-11-23T06:00:00.000-05:002015-11-23T06:00:00.080-05:00Storytelling Tip - November 23<div style="text-align: center;">
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"There are people with narcolepsy all over the place. 1 in every 2,000 people have narcolepsy. So it's <b>really not that rare but it's invisible</b>...By me telling my story, other people realized that they weren't alone either. See, we don't always have a cure for the diseases, but we do have a cure for the loneliness today," says <a href="http://julieflygare.com/about/" target="_blank">Julie Flygare</a>, the founder of <a href="http://project-sleep.com/" target="_blank">Project Sleep</a> & author of <a href="http://www.amazon.com/Wide-Awake-Dreaming-Memoir-Narcolepsy/dp/0988314908" target="_blank">Wide Awake and Dreaming: A Memoir of Narcolepsy</a>. Julie's tip from experience,<br />
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<span style="font-size: large;">"Prescribe another patient."</span></h2>
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-Julie Flygare, Stanford Medicine X 2015</div>
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If you could be that patient, that shares your health story to support others in feeling less isolated, try Julie's storytelling advice, "Begin Anywhere–Just Begin." Julie offers her perspective and other practical suggestions in the <i><a href="https://globalgenes.org/toolkits/storytelling-2/storytelling-begin/" target="_blank">Using Storytelling to Raise Awareness for Your Rare Disease</a></i> RAREToolkit. My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-18609133704129950952015-10-21T11:29:00.001-04:002015-11-23T04:08:59.484-05:00Storytelling Tip - Oct 21<blockquote class="twitter-tweet" lang="en-gb">
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<a href="https://twitter.com/JillMBailey">@JillMBailey</a> <a href="https://twitter.com/Go_ON_UK">@Go_ON_UK</a> <a href="https://twitter.com/gdsteam">@gdsteam</a> Over coffee I helped a friend start her first blog. You don't have to be an expert to be a <a href="https://twitter.com/hashtag/digitalfriend?src=hash">#digitalfriend</a>.</div>
— Emma Rooney (@blumencasey) <a href="https://twitter.com/blumencasey/status/644371878279254016">September 17, 2015</a></blockquote>
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Become a digital friend and help others develop their digital skills to be able to participate and share their stories in a digital world: <b><a href="http://www.digitalskills.com/volunteers" target="_blank">www.digitalskills.com/volunteers</a> </b><br />
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<b>#digitalfriends</b></h2>
<script async="" charset="utf-8" src="//platform.twitter.com/widgets.js"></script>My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-39073718799058362882015-10-01T09:00:00.000-04:002015-11-22T05:17:38.609-05:00Your Online Health - social media & storytelling workshop<a href="http://www.eurogaucher.org/gb/international_gaucher_day" target="_blank">International Gaucher Day 2015</a> '<i>Rare But Not Alone</i>', initiated by the European Gaucher Alliance, is celebrated on Thursday 1st October, 2015. The National Gaucher Foundation, Inc., in the United States, organizes <a href="http://www.gaucherdisease.org/gaucher-awareness-month.php" target="_blank">Gaucher Awareness Month</a> every October. This year, the <a href="http://www.gauchercanada.ca/" target="_blank">National Gaucher Foundation of Canada</a> is also holding their National Patient Conference in Ottawa on October 17th - 18th. The theme this year is '<i>Gaucher Disease: Evolving Landscapes</i>' and will include a special workshop session from the My Normal project on social media and storytelling. <br />
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NGF Canada Workshop Description:<br />
<span style="font-size: large;"><b>Your Online Health: social media for information, support & advocacy</b></span><span style="font-weight: normal;"> </span><br />
<span style="font-weight: normal;">Presented by Emma Rooney </span><br />
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We are strongly advised to not trust the Internet when it comes to our health, but the truth is, most of us are already accessing a large amount of health information online. The more pertinent question, what are YOU using it for and how are you managing your online health?<br />
This workshop will be a chance to share your favorite online resources, to get practical tips for evaluating the validity of information you find, and to examine considerations around protecting your privacy. Find-out where to go for the latest Gaucher news, information, and personal stories. We’ll explore the online world of medical journals, patient registries, bloggers and writers, patient support communities, and even health apps that are currently popular. <br />
We’ll reflect on how various social media channels are changing education, advocacy, and fundraising for the global rare disease community. Exciting online initiatives from Canada and beyond will be showcased, along with the Global Genes storytelling and social media toolkits. Don’t miss your chance to stay up-to-date with the online landscape. Leave this session better equipped to participate and take advantage for your health. </div>
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<b>Videos and other resources shared during this session can be viewed here: </b><a href="http://www.mynormal.ca/p/your-online-health-workshop.html" target="_blank">http://www.mynormal.ca/p/your-online-health-workshop.html</a></div>
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My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0tag:blogger.com,1999:blog-3495531142842446239.post-41890966558266101282015-09-20T05:13:00.002-04:002015-11-22T05:43:56.729-05:00Storytelling Tip - Sept 20I picked up Brian Grazer's book, <a href="http://books.simonandschuster.com/A-Curious-Mind/Brian-Grazer/9781476730752" target="_blank"><i>A Curious Mind</i></a>, expecting curiosity secrets, but instead also got a whole lot of great advice on storytelling. Brian is the guy who produced <i>A Beautiful Mind</i>, along with many other acclaimed films. He's a champion of curiosity but says, <span id="yiv5581311019yui_3_16_0_1_1441787960288_28027"><span style="font-size: large;">"The most important way I use curiosity: I use it to tell stories." </span>His book captures his philosophy and gives us a glimpse into the hundreds of curiosity conversations he's initiated with smart, famous, and interesting people from all backgrounds. <span style="font-size: large;"><br /></span></span><br />
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<span id="yiv5581311019yui_3_16_0_1_1441787960288_28027"><span style="font-size: large;">"I use curiosity every day to see the world through other people's eyes, to see the world in ways I might otherwise miss. It's totally refreshing to be reminded, over and over, how different the world looks to other people. If we're going to tell stories that are compelling and also varied, we need to be able to capture those points of view."</span></span> </blockquote>
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<span id="yiv5581311019yui_3_16_0_1_1441787960288_28027"><span style="font-size: large;">-<a href="https://twitter.com/BrianGrazer" target="_blank">@BrianGrazer</a></span></span> </blockquote>
My Normalhttp://www.blogger.com/profile/09723308105962184132noreply@blogger.com0