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Is Facebook Where It’s At For Rare Diseases?

Posted by | 4:28pm on Thursday, February 25, 2016
Facebook and Rare Diseases by the numbers

Rare diseases by the numbers:  

  • 7,000 different types of rare diseases
  • 30 million people in the US living with rare diseases or 10% of the US population
  • 50% affected by rare disease are children

Facebook usage by the numbers:

  • 161 million daily active users in the US
  • Users spend 40 minutes (on Facebook) in the US per day alone

So what does all this mean?

Imagine having 500 friends on Facebook and up to 100 of them has a rare disease or is the caregiver of someone with one.

Rare doesn’t seem so rare any more.

It probably isn’t a huge leap to suggest (as implied above) that a high percentage of those affected by a rare disease are on Facebook, so what does that mean for a drug manufacturer or an advocacy group?

Fish where the fish are

If you are trying to build an advocacy or support group, you want to make it as easy as possible for people to join, participate, engage, and find the support desired.  If you are trying to promote or build awareness for a rare disease therapy, you want to be where people are discussing the disease and spending a significant amount of time.  Facebook has organically become such a place.

On average, Facebook users (in the US) spend 40 minutes per day on Facebook.  People affected by rare diseases (both directly and indirectly) are usually very knowledgeable and strong advocates who are looking for community.  No one with a rare disease wants to feel like they are alone.

This makes Facebook a perfect place to facilitate this community (and build awareness for a group, therapy or drug at the same time).  To borrow a phrase from a friend, Ted Rubin, Facebook is an ideal social media channel to maximize a brand or organization’s Return on Relationship™ or ROR.

What is Return on Relationship™?     

According to Ted’s blog, ROR in this case is the value accrued by a brand (or association) due to nurturing a relationship.  ROR can and should lead to a Return on Investment (ROI) but it’s much more than just a monetary metric.  Yes, there is a financial incentive for brands (for example) to encourage adherence.  But in the end, all of us in the rare disease space are trying to help others find relief through treatment that can improve quality of life, empower with information to take control, and enable a community so no one feels like they have to “do it alone”.

Having a rare disease can be very challenging and downright frustrating on a number of levels.  The entire process of being diagnosed with a rare disease can take years.  Once diagnosed, regaining control of your life and learning about treatment options can take more time.  And finally once treatment is started, determining the correct dosage and staying on drug can be a process.

Engagement and building relationships with patients and caregivers (in other words developing a strong ROR) is what ties this all together and ultimately leads to ROI in the long run.

Stay tuned in the coming months as we explore all the tools Facebook offers to maximize ROR and in turn ROI from both a content and advertising perspective.  

About Neil Rubenstein

Neil has more than 15 years of experience in integrated marketing and analytics across a number of different industries. Neil is responsible for online advertising, analytics, and measurement across all Siren clients. Part of his job is to ensure that all online advertising is implemented with analytics and measurement in mind. Neil is passionate about using the internet and social media to encourage deeper relationships with patients, caregivers, and HCP’s. …

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  • Ted Rubin

    Good luck with everything Neil. Makes me feel good that what I talk and write about means something to others. Great post, I agree wholeheartedly, and thanks for the mention.

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