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Rare Disease Day – Making connections online & offline

February 15, 2015

February 18, 2015 at 1pm ET (10am PT), Isabel Jordan moderates #hcsmca in celebration of International Rare Disease Day. 

By Isabel Jordan (@seastarbatita)

headshot Isabel Jordan

Isabel Jordan

February 28th marks International Rare Disease Day – a day to bring awareness both within and outside the rare disease community. Several years ago some very smart people realized that while individual rare disease communities may be small, collectively the rare disease community is actually very large. Up to 1 in 12 people will have a rare disease in their lifetime and the people facing a rare disease shares a common journey with common obstacles. Rare Disease Day is a way of igniting the rare disease community to work together and achieve common goals as well as to increase the strength of our voice to those who wield power and make decisions.

The theme of this year’s Rare Disease Day Day-by-day, Hand-in-hand started me thinking about how the community I’ve found in both the offline and online world has influenced my lived experienced as a parent of a child with a rare disease ― the parents, people living with rare disease, those working in health care and volunteers I’ve met through the Rare Disease Foundation. My son, at 13 is still undiagnosed and when we started on his diagnostic journey as a preschooler we had no peers to turn to for answers, advice or guidance. Creating our own rare disease community let me share and find common goals, strategies and a voice for advocacy that gave meaning to our family’s struggles. Finding a greater community of health care providers and other volunteers willing to give their support has given me hope that our health care and research needs can be realized.

Isabel and her children

Isabel and her children

Eventually my personal rare disease journey crossed into my world of social media as more than just a place to share my kids’ photos and latest lunch ideas. My network started to grow nationally and internationally, giving me access to new perspectives and ideas. My social media rare disease community was becoming as important to me as my “meatspace” (in person) rare disease community, but in a different way. I started to become interested in how my online and offline communities could join and interact with one another.

How have my online networks changed my lived experience with rare disease? As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey. I look for researchers, doctors, other connected parents to see what they are posting. Could what they are saying have relevance to our journey? To my son’s care? Can their strategies transpose to ours? We hear stories where this happens, where communities crowdsource one another. Could it happen to us?

My own story echoes this because it was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas.

The rare disease community depends on social media. We are individually spread thin with 1 in 10,000 here and 1 in 100,000 there and the undiagnosed all over. But together, well, together we can talk. We can connect. We can crowdsource ideas, and strategies and connections. But I think we can start doing it better. The question is:  How?

  • T1: What opportunities have social media afforded rare disease communities in particular?
  • T2a: What’s better in online rare disease communities than our geographically closer communities?
  • T2b: What are the shortcomings of online rare disease communities compared to IRL connections?
  • T3: Can the offline world of rare disease communities benefit from social media connections? How?
  • T4: How can the online and offline rare disease communities work better together?

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