The top 50 social media influencers in orphan drugs and rare disease

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1 The top 50 social media influencers in orphan drugs and rare disease

2 Social media and the rare disease community Earlier this year at the 2013 edition of World Orphan Drug Congress USA I was excited to see the high level of engagement surrounding the event on social media. Event attendees were tweeting, people who hadn t been able to make it to the show were following the event through its hashtag, and in general the community seemed to be really responding to the event on the Twittersphere and other forms of social media. That got me thinking. Rare disease is, by its very nature, rare. As such the patients who suffer with these diseases can often feel isolated and alone in their path to finding diagnosis, treatment, and hopefully a cure. What better way to find other patients to empathize and share experiences with than through social media? With the power of Twitter, Facebook, LinkedIn groups, and other online communities, a patient who was once the proverbial needle in the haystack suddenly finds himself connected to other patients going through the same life journey. Talk about empowering! As well as being a powerful support network, social media can also give the so-called epatient the power to influence both legislation and orphan drug manufacturers. By giving the rare disease patient community a voice, social media enables them to put pressure on government and pharma to discover, fund and ultimately approve much-needed rare disease treatments. But the power of social media goes both ways. With such a widespread and diverse patient pool it can often be hard for pharma and biotech to access patients for clinical trials. Social media gives industry a much wider reach and easier access to niche patient pools. With that being said, turn the page for more information on the top 50 social media influencers in this sector!

3 The top 50 social media influencers in orphan drugs and rare disease This report highlights the top 50 social media influencers in orphan drugs and rare disease. They are listed in alphabetical order, and were selected based on activity levels, engagement, and community reach. The influencers include representatives from patient advocacy groups, industry and government. Where an influencer has a Twitter handle, Facebook page and LinkedIn group, I chose to highlight just one to avoid repetition. That s not to say that their Facebook page isn t as great as their Twitter handle or vice-versa, so do check out their other social media platforms too! I hope this report is useful, and helps you identify some new, valuable sources of industry news and community engagement. If I missed anyone, let me know. I value your feedback! Caroline Hornby Marketing Director World Orphan Drug Congress USA

4 With over 36,000 tweets, and 3,500 followers, Ben's Friends is a great handle to follow for information on rare disease patient communities and support groups. With over 350 tweets, and 760 followers, Cambridge BioMarketing shares interesting articles and updates in the orphan drug space, with a particular focus on marketing developments. And, they do it with flair. No boring corporate speak here! With over 2,600 tweets, and 750 followers, Caring Voice Coalition shares information on specific rare diseases, clinical research and regulatory update. A good overview of all things orphan drug related.

5 With over 5,400 tweets, and 4,600 followers, CheckOrphan's twitter account aims to educate, unite and empower people affected by and working with rare diseases. This is a great handle to follow for information on clinical trials and more. With over 100 tweets, and 400 followers, Compass Healthcare Marketers tweet interesting whitepapers and stories of community engagement. With over 270 tweets, and 670 followers, Denis lends a personal note to EURORDIS, as its Patient Advocate and Web Communications Officer.

6 With over 200 tweets, and 400 followers, Durhane tweets about legislation and patient advocacy. As President of the Canadian Organization for Rare Disorders, she often tweets about rare disease and legislation in Canada. With over 10,700 tweets, and 3,700 followers, Eileen shares her vast knowledge of social media and rare disease with her twitter followers. Working for Siren Interactive, Eileen is an active blogger on SirenSong, and also leads the #socpharm tweetchat every Wednesday from 8 to 9 pm EST. Definitely worth a look if you are not familiar with it! With over 770 tweets, and 3,200 followers, the EURORDIS twitter handle shares information on patient advocacy, particularly for the European audience. Also worth a look is their new where they share videos related to rare disease.

7 With over 1,400 tweets, and 980 followers, like Eileen, Frieda works for Siren Interactive, and often blogs on SirenSong. Follow Frieda for information on social media in pharma, the e-patient and more. With over 4,000 tweets, and almost 8,000 followers, Genetic Alliance is a health advocacy organization committed to transforming health through genetics. Whilst not rare disease specific, this is worth a follow for up-to-date information on genetic research and health advocacy. With over 200 tweets, and 150 followers, GENPHARM Services share interesting information specific to the Middle Eastern and North African markets.

8 With over 4,700 tweets, and 4,300 followers, Global Genes Project has an extremely active twitter account, and a very engaged audience. This is a great handle to follow for information on clinical trials, new orphan drug designations, and rare disease advocacy. With over 1,400 tweets, and 350 followers, the Hereditary Neuropathy Foundation (HNF) raises awareness, funds scientific research, and educates the medical community as well as the general public about Charcot-Marie-Tooth disease (CMT). An interesting twitter handle to follow for information and resources related to CMT. With over 8,100 tweets, and 6,460 followers, Inspire provides online patient support groups for a variety of diseases. Not rare disease specific, but great for patient engagement, whatever the disease!

9 With over 400 tweets, and 660 followers, JUICE Pharma shares insights into the world of marketing for healthcare, wellness, and pharmaceuticals. Also worth checking out is their new blog, the JUICE BLOG, which is still in its early stages but certainly has creative appeal. With over 6,000 tweets, and 1,000 followers, Liftstream is great if you are looking for work in life sciences, or looking to hire a new executive for your team. They regularly tweet on available jobs, but beyond that they also tweet interesting industry news around topics like rare diseases, cancer and cell therapy. With 180 likes, the Facebook page for the Malaysian Rare Disorders Society might not have a huge reach, but it does provide a valuable source of patient support for the country s rare disease patient community. This Facebook page highlights organized activities for people affected by rare disease, as well as interesting videos and bits of news surrounding this group.

10 With over 3,300 tweets, and 530 followers, Marianne is a great one to follow for information on community engagement. She also shares a lot of information on cryoglobulinemia, so definitely one to follow if you want to know more about that disease in particular. With over 1,100 tweets, and 4,800 followers, NORD's twitter feed gives a voice to the rare disease community as a whole in the US. Tweets provide insights on patient advocacy, funding, clinical trials and more. With over 900 tweets, and 7,300 followers, the twitter account for the NIH Office of Rare Diseases Research is a valuable source of information on clinical trials, new approvals and legislation. Definitely not one to miss, though it is somewhat dry reading

11 With over 4,400 tweets, and 300 followers, the Orphan Druganaut twitter account provides interesting news surrounding the world of orphan drug developments. Follow this handle for information on orphan drug designations, clinical trials and more. And be sure to check out the blog too! With over 1,100 members, this LinkedIn group is extremely active and definitely worth a look for information on regulatory developments, clinical trials, interesting whitepapers and more. With over 2,500 members, this LinkedIn group is another to join to engage with the orphan drug community on a variety of topics. With over 770 likes, this Facebook page is for Orphanet, the reference portal for information on rare diseases and orphan drugs, particularly in Europe. With the aim of helping to improve the diagnosis, care and treatment of patients with rare diseases, the Facebook page shares interesting videos, petitions and generally helps foster a sense of community and engagement.

12 With over 1,200 tweets, and 1,700 followers, Parent Project MD tweets on Duchenne in particular. If this is of interest to you, this is the twitter handle to follow! With over 1,800 tweets, and 2,800 followers, PKD Foundation tweets on polycystic kidney disease, and provides a voice and community for PKD patients and caregivers. With over 900 tweets, and 330 followers, the Premier Research twitter account is very engaging and personable, and often tweets from industry events. A great way to gain access to events that you can t attend yourself.

13 With over 250 likes, this Facebook page represents the Swiss rare disease patient community. With content in French, Italian and German, it s a great resource for the rare disease community in the region. The PSR Orphan Drug Experts twitter account hasn't been used that much as of yet, but it already has 550 followers. Besides, it's quality over quantity, so it's one to watch. With over 540 tweets, and 215 followers, PXE International tweets on pseudoxanthoma elasticum in particular, and patient advocacy in general.

14 With over 165 likes, RaDiOrg s Facebook page provides an online community for Belgium s rare disease community. Posts include photos, community events and videos. With over 1,300 tweets, and 1,300 followers (a follower per tweet!), RareConnect unites rare disease patients, families and patient groups. As a partnership between EURORDIS and NORD, this twitter handle is a good one to follow for international news and updates, with a trans- Atlantic perspective. Rare Disease Day is the last day of February every year. There are twitter accounts for multiple countries, so you should definitely look up the handle for your particular country. Besides providing information on Rare Disease Day activities, the handles serve as a rare disease community, sharing information on patient advocacy, new orphan drug designations, and much more.

15 With over 800 tweets, and 900 followers, the Rare Disease Foundation twitter account provides support and advocacy. Based in Canada, tweets share activities in Canada and beyond. With 380 tweets, and 300 followers, the twitter account for the Rare Disease Legislative Advocates group tweets on... you guessed it, legislation! Definitely one to follow for information on US laws and regulations surrounding rare disease and orphan drugs. With over 2,200 tweets, and 1,200 followers, Rare Disease Report is a great twitter handle to follow for a mix of patient advocacy, regulatory news, and industry updates. They also tweet lots of photos and interesting videos. Be sure to check out their blog and online community too.

16 With 280 tweets, and 230 followers, Rare Disease Team tweets on a mix of policy, industry developments and patient advocacy issues. Based in Canada, they do tweet on international issues, with recent tweets including mentions of what's going on in the US, Brazil and beyond. With 1,200 tweets, and almost 2,000 followers, Rare Disease UK provides a voice for the British rare disease community. Mainly tweeting on patient advocacy, support and education, it s an interesting one to follow, especially if you are based in or interested in learning more about rare disease in the UK. With almost 1,000 tweets, and over 2,100 followers, Rare Genomics is focused on genome sequencing and research for families with rare diseases. Tweets include interesting clinical trials, and information on genetic engineering, regenerative medicine, and cell therapies.

17 RareShare is a bit different from the other social media influencers in this report. Not a twitter handle, LinkedIn group or Facebook page, but rather a social hub or online network. RareShare has lots of different online communities for different rare diseases check it out at RareShare.org. With almost 500 likes, the Facebook page for Rare Voices Australia provides an online community for Australians suffering with rare disease. In a country as large and widespread as Australia is, this can be an important resource for rare disease patients, especially those who live in geographically isolated regions.

18 With almost 1,200 likes, the Rhode Island Rare Disease Foundation Facebook page shows that just because it s a small state doesn t mean that it isn t affected by rare disease. Providing information on community activities, patient advocacy and more for families living with rare disease in the Rhode Island region. With over 500 tweets, and 200 followers, Robert is the CEO of Bellus Health, and tweets on orphan drug pipelines and drug development. With almost 400 tweets, and almost 300 followers, Sällsynta Diagnoser provides a voice for the Swedish rare disease community. Fair warning the tweets are in Swedish. I happen to speak Swedish so find it interesting, but if you don t speak Swedish you may need to use Google Translate. Or find a friend who does speak Swedish! Regardless, it s a great resource for information on Swedish rare disease patient advocacy, legislation and more.

19 With over 2,700 tweets, and 1,200 followers, SanfordCoRDS is the twitter handle for the Coordination of Rare Diseases at Sanford Research. Their aim is to advance therapies for rare diseases through the formation of a central patient registry for all rare diseases. Tweets provide information on patient registries, patient advocacy and more. And be sure to check out their monthly tweetchat, #CoRDSChat, where they often have industry guests doing a Q&A session. With over 3,400 tweets, and 500 followers, the SavingCase twitter account is a great resource for all things rare disease and orphan drug related. Yes, the focus is on Hunter Syndrome. But, other areas of focus include wider legislative issues and more. Melissa Hogan, Case s mother, gave a moving and powerful testimony a couple of years ago at World Orphan Drug Congress USA check it out at Case has a Dragon Mom, alright (Melissa gave me that term earlier this year via Twitter see, I m learning.)! With over 3,200 tweets, and almost 900 followers, Stephanie tweets on a variety of pharma-related topics. But, as a rare disease patient herself she often comes back to issues surrounding rare disease patient advocacy, legislation and research. Make sure you check out her twitter handle.

20 With over 3,000 tweets, and 1,200 followers, The Rarelink twitter account shares inspiring rare disease patient stories, community support, and information on new orphan drug approvals and clinical trials. And last, but certainly not least, we have Wendy White of Siren Interactive. Wendy is the third Siren employee to make this list, which goes to show how clued in they are on the value of social media in the rare disease space. With over 200 tweets, and 450 followers, Wendy tweets on clinical trials, patient advocacy issues, legislation, orphan drug approvals, and more. She is also a regular contributor to SirenSong, so be sure to check that out too. That brings the list to an end if I missed out on anyone let me know! You can me at

21 We d love to hear your views on all of this Join the conversation Click here to view our YouTube channel Click here to contribute to our LinkedIn discussion Click here to follow us on #WODC Click here check out our Total Biopharma blog, for more updates on orphan drugs, rare diseases and more

22 We d love to meet you too We re hosting World Orphan Drug Congress USA 2014 on April in Washington, DC, and would love to see you there. Hear from pharma, biotechs, government and patient groups as they discuss: How to access emerging markets around the world How to harmonize regulatory, reimbursement and patient access globally How to diagnose rare diseases early How to articulate the value of orphan drugs How to access, maintain and relate to rare disease patients more effectively How to optimize social media How to manufacture low volume orphan drugs and sustain supply How to launch successfully For more information, go to

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