What matters in rare disease during a pandemic?

Social media allows rare disease patients and carers to make important social connections, share experiences and stay up to date. We look back at our social media engagement and community responses from the past few months to gain insight on what really matters to our patient communities during a pandemic.

In January 2020, the top-performing social posts across Raremark’s 25 social channels were about existing and new treatment options. Then came COVID-19 and we started reviewing our content calendars, adding different, relevant subjects to support rare disease patients during the global lockdown.

Did we completely change our social-media calendar? The answer was simple: no. Our followers still wanted to read the latest information about their condition, and we observed no decrease in engagement from March to May on topics relating to new treatments or research opportunities.

In March, as coronavirus reached all corners of the globe, we reached out to our community to find out how they were doing. We asked for self-isolation tips and ran polls to find out what extra precautions they were taking because of the pandemic. It was clear that rare disease patients had started self-isolating sooner than many others and were taking extra precautions because of their condition.

Based on user engagement, it was evident that social posts about real patient experiences remained important to the community. The need to connect with others and find support in the words of fellow rare disease patients and carers remained high from March to June. But the patient stories changed.

We now share stories of hope, including survivor stories, from people living with a rare disease, who have also beat the coronavirus. Engagement with these posts is usually high. Our social post about a six-year-old cystic fibrosis patient overcoming COVID-19 received over 1,000 interactions in just a couple of days.

#flattenthecurve and #stayhomesavelives became popular hashtags for those posting about COVID-19 and their rare disease. Interestingly, though, hashtags on disease awareness in general remained strong, with #MGAwareness, #SickleCellAwareness, #CureIPF and #AwareAboutRare appearing frequently. Despite COVID-19, raising awareness of rare diseases remains a priority for the patient community.

And now the climate is changing. As people are coming to terms with the new normal many questions have been answered. Conversations have changed. Back in March, it was common to hear comments such as: “I probably need to get extra medication, so I won’t have to go into the hospital in case of a crisis. I’m not sure what to do.”  The uncertainty and questions are fading. Patients have experienced successful telemedicine appointments with their doctors and now the world waits to see what happens next.

A reflection of this change is obvious from the closed Facebook group we created in April. The group includes hundreds of rare disease patients, discussing the impact of coronavirus. User engagement has been high, primarily because the content of the page is not public, and we have taken measures to ensure only those affected by rare disease can join. Despite news of lockdowns easing around the world, when asked, patients are still cautious about venturing outside. It will be interesting to see how patient experiences and sentiment changes as time goes on.

We’ve taken in the following learnings from recent months:

  • Rare disease patients are frightened (even extra-cautious) about COVID-19, but hopeful
  • Raising awareness of their own rare disease and reading about treatments, remain a priority for patients
  • A lot of questions have been answered for the rare disease community, and now it’s a waiting game to see what happens next

Society will face more challenges over the coming months. And if we are to continue engaging with our communities through these unrivalled times, we need to listen to them, understand what they want to read next, and deliver the news and the stories that capture the prevailing sentiment in the new climate that emerges.

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Interested in hearing more? Feel free to reach out to us, and we’ll make sure to get back to you as soon as possible.