Becoming a parent is a beautiful experience. It’s also hard. The preparation. The nesting. All the anticipation and anxiety that builds over nine months. Still, it feels sudden in the moment. Your family has grown. You are now responsible for this small life and everything that baby will become. Perspectives change dramatically, almost overnight. Priorities are shifted. New fears emerge that create both sleepless nights and a few gray hairs.
That’s if you’re lucky. If your precious newcomer is healthy. If you’re heading down the path of parenthood that most people experience. For others, it’s not this simple. Their path is rare, and the complexities may become apparent in the hours, days, months, or even years after birth.
Somewhere along the way, that child likely undergoes genetic screening. Maybe a variant gets flagged. Parents are handed pamphlets of information and sent to a range of doctors for more evaluation. Words they have never seen or heard. Diagnostics tests, trials, treatments… does insurance cover this? What does our future hold?
Other parents might not find out until later in life. Months or years later. Maybe there are some concerning symptoms or delayed development patterns. Their primary care doctor might not understand or even believe them. They bounce from one clinician to the next seeking answers. They often must find those answers on their own and become an expert in something they never expected or hoped to discover.
Now imagine doing this alone. Feeling like you are the only parent ever to experience this life-changing challenge. These are the parents of children living with a rare disease.
There are an estimated 10,000 rare diseases affecting more than 30 million people in the United States1. Individually, each affects fewer than 200,000 people. The ultra-rare diseases affect fewer than 50,000 people. Many are undiagnosed. Some stop seeking care or have no treatment options. They end up isolated. Exhausted. Wondering if anyone else out there understands.
Enter Social Media
As a communications tool, social media has many flaws and limitations. But it also possesses tremendous power to connect people who face common challenges, regardless of geographic or economic barriers. Moms and Dads set up pages and groups to share their experiences in hopes of finding other families with the same rare disease, so they can feel a little less alone. They are looking for 10, 20, maybe 100 other families they can finally talk to on the same level. Sharing lifestyle tips. Discovering centers of excellence and clinical trials together. Talking about their unmet needs and learning about potential treatments. As their children get older, they often begin using social media to post about their personal experiences living with a rare disease. Helping people see how these conditions present in their daily lives and how they struggle and overcome those challenges.
These tightknit communities are intimate and deeply emotional. And they often start out in private and without many resources. The groups become highly educated on their rare diseases. There is a certain kind of trust and respect that builds, forming strong bonds among individuals affected by a common enemy that only they can understand.
Sometimes these social media communities grow dramatically over time, and there is power in numbers. Some of these communities become public movements that help others understand a rare disease. They can spur fundraising efforts, inspire investment in new research, and motivate policy changes on local and national levels. These caregivers and patients often find themselves transformed into professional advocates and their groups evolve into nonprofit organizations with lasting impact.
Now Enters the Biotechnology and Pharmaceutical Industry
The companies developing diagnostic tests and new therapies for rare diseases also want to be on social media. They know it’s important to engage with these communities of patients and caregivers. These are the people they serve by developing new treatments over decades to hopefully address many of their unmet medical needs.
At CG Life, these are our clients. It’s our responsibility to help them join and engage these rare disease communities in the right way: with respect, transparency, authenticity and empathy. It’s a complex social path to navigate. It requires a much different mindset when compared to traditional brand marketing approaches that are often too cold or blunt for these communities.
We often work to remind our clients to remember who these individuals are and what they have been through just to find a doctor who will listen or another family who understands. They must not forget that these are people who are often skeptical because they have been forced to move through a complex healthcare system independently and with little support or answers. It takes time for companies in our industry to build trust. A brand ad with a catchy tagline isn’t it. A conversation is.
That’s what social media was built for. Engagement. Sharing ideas and learning from each other. That often gets buried in the noise on these platforms today. The constant self-promotion. The shock and awe approach to compiling clicks. Viral content. These approaches might work for consumer product marketing, but they’re not what rare disease communities want or need.
Rare disease communities on social platforms are looking for practical tools and resources, and trainings and education. Many would like to hear from the scientists doing the research, or from the clinicians participating in clinical trials, or from other people living with a rare disease who have experience with a new treatment option. They just want answers.
That is our role and that of our clients. We work to show these communities who is working day and night over years and decades (often putting their entire careers on the line) to deliver a new treatment option. We show them our clients’ personality. Their motivation. Their passion. Their fears. Their challenges. And talk about how that drives their drug development work.
This creates empathy, trust and credibility by humanizing the industry, and showing that they are working toward a common goal with patients and caregivers.
We tell our clients to ask questions. Accept that we don’t know everything there is to know about a rare disease. And we must seek to understand it. We must build spaces on social media where caregivers and patients can talk with industry candidly about their specific needs. We must hear what they want from biopharma companies, and find ways to act on that input. Taken all together, these efforts use social media to demonstrate our commitment to the community.
Now, if any medical, legal, or regulatory reviewer made it this far, they are probably raising both eyebrows. Open dialogue? Yes! Open dialogue. The FDA encourages this. A close review of the guidance on industry use of social media issued by the agency more than a decade ago repeats a few very important phrases including “independent user generated content” and “control and influence.” It is our responsibility at CG Life to ensure the engagement we create on social media follows these guidelines. It’s highly regulated and requires careful management of statements, both proactive and reactive. If our clients have any level of control or influence over the content – especially if it’s being used to promote a treatment – it must include fair balance. But those FDA guidelines also opened the door to authentic communication with independent social media users and provide us with the flexibility to correct misinformation about treatments that might appear on these platforms.
At CG Life we believe our experience with guiding clients through the complexities of launching rare disease brands and our deep experience in social media makes us the perfect local guides for companies at all stages of developing and marketing rare disease brands. Next time you sit down to build a communications strategy, take a moment to think deeper about that social media component. It’s not a brand promotion. It’s a chance to tap into communities that have been built by families over painstaking years in efforts to find each other. We have opportunities to listen and learn from them. And then engage them with the resources and information they really need.
Eventually we will build trust and partnerships that have generational impacts on at least one of those 10,000 rare diseases. That is powerful work. And it all begins by listening to the parent in desperate need of answers.
