RARE BLAB 02: Social Media 4 Rare Disease Missions

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RARE BLAB is hosted by Kristin Smedley, President and Co-Founder of the Curing Retinal Blindness Foundation.  Rare Blab is broadcast on the Blab.im platform with a goal of connecting rare disease mission leaders to resources to further rare missions!  If there is a topic you’d like to see covered on RARE BLAB or if you are interested in being a guest, please send an email to curingretinalblindness@gmail.com  Connect with Kristin on Twitter @KristinSmedley


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The second episode of RARE BLAB was a great social conversation about using social media to expand rare disease missions! Kristin was honored to chat with

Stephanie Fischer, @RarePOV, Every Life Foundation   sfischer@everylifefoundation.org and 

Emma Rooney, @BlumenCasey, My Normal (Storytelling for Rare Diseases)




WATCH and scroll down for links and notes mentioned in the Blab!


The Basics: Slides from Stephanie’s breakout session on social media at Rare Disease Week on Capitol Hill can be found at https://t.co/gWg195eLYl.

Hashtags Tweetchats/Conferences: Symplur Healthcare Hashtag Project lists tweetchats and conferences. You can easily register a new hashtag here, too. It is free to join. http://www.symplur.com/healthcare-hashtags/

Storify:  enables you to tell a story with tweets from a tweetchat, conference or hearing, or based on a hashtag. It is free to join. https://storify.com/

Rare Disease Advocate to Follow on Twitter@SavingCase – an advocate witht he incredible  #ProjectAlive #WhenIGrowUp campaign with video

Twitter Tips: #TwitterSmarter Tweet Chat and podcast with Madalyn Sklar – Madalyn is a top Twitter influencer and this tweet chat is huge.  Tons of Twitter tips every week, Thursdays 1pm Eastern on Twitter http://www.madalynsklar.com/twittersmarterchat/ (mentioned at the 32:15 mark)


Global Genes toolkits for rare disease:

How to Promote Your Rare Disease Story through Social Media: https://globalgenes.org/toolkits/

Storytelling for your rare diseasehttps://globalgenes.org/toolkits/storytelling-2/why/

Global Genes Rare Disease Patient Summit: September 22-23 Huntington Beach, CA http://www.cvent.com/events/2016-rare-patient-advocacy-summit/event-summary-105d2cdeb479495fbafc73cc0ad4f47f.aspx


Video Storytelling: Kristin’s new Facebook community Thriving Blind uses lots of video to share tips and resources for living with the rare disease her boys have, CRB1 degenerative retinal disease

Facebook Live: A new feature from Facebook that gives people a huge reach.  This is a great post about doing your first Facebook live broadcast from a top influencer, Kim Garst.  It is geared toward reaching/gaining “customers”, so think of your rare patients, supporters, etc as your “customer” audience.

Rare Disease Mission Pages: Follow these rare disease mission Facebook pages on to see how they utilize Facebook to spread awareness. Curing Retinal Blindness Foundation   Every Life Foundation for Rare Diseases


Social Media Influencers in Rare Disease: The World Orphan Drug Congress released a list of top social media influencers in rare disease in 2013 and updated it last year.

– Original: http://www.terrapinn.com/template/Live/documents/7057/16197?#sthash.w95Xzns7.dpbs

– Update: http://www.orphan-drugs.org/2015/01/29/social-media-rare-disease-community/

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