Social media and the rare disease community (Alan Thomas - Bensfriends)

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Social media and the rare disease community

In Advocacy by Freya SmaleJanuary 29, 2015Leave a Comment

Orphan Drug Social media influencers

Social media has opened up an infinite amount of possibilities for patients and patient advocates, creating a large online community. This powerful platform has enabled rare disease stakeholders to raise awareness of diseases, fight for treatment, impact legislation, helped find participants for clinical trials, speed up market access and much more!

Social media is extremely powerful in orphan drugs and rare disease
Back in 2013, in the run-up to the World Orphan Drug Congress USA 2014 we researched the rare disease social media landscape and profiled 50 social media influencers working within the industry. Considering the impact that social media has had on raising awareness of rare diseases, we decided to take another look at the social media landscape. This eBook takes a look at 18 additional social media influencers in orphan drugs and rare diseases. The social media influencers in this report were selected based on activity levels, engagement, and community reach. The influencers include representatives from patient advocacy groups, industry and government, from North America, Europe, Asia and beyond.

Want to know who made the list? Download the report now to identify some new, valuable sources of industry news and community engagement.

Get your copy here!http://www.orphan-drugs.org/2015/01/29/social-media-rare-disease-community/

So proud of this going around Twitter and Facebook

@alanROYGBIV, you're famous! #TopOfList http://bit.ly/1CU13pa via @OrphanConf #raredisease #orphandrug #socialmedia

Congats Alan..I for one,are glad you're here..displaying a 'Spectrum' of light on Ataxia.


Many Thanks

We are in this together "Living with this Life-Limiting condition"

Information from my contacts in Austrialia

http://www.fara.org.au/home-2/fara-au/

http://www.scars.org.au/index.html

Alan (Wales, UK)"

Thanks to all for great feedback

@alanROYGBIV Congratulations! You are the best!!! Just got back on and saw this amazing news.

Alan