A Look at 3 Entrepreneurial Efforts in the Rare Disease Space

I previously shared about the amazing time I had listening to patients and caregivers at the RARE Patient Advocacy Summit that is hosted by Global Genes.  One of the sessions at the event was a number of organizations that have created health IT applications specific to rare disease.  It was incredible to see how something like a rare disease could drive people to create solutions for themselves and their loved ones.  Their passion for the topic and first person understanding of the challenges was amazing to see.

Given their commitment to solve important problems for rare disease patients and their caregivers, I thought it would be great to feature each one in a video interview here on Healthcare IT Today.  Check out the three companies featured below.  Plus, all three applications are free for rare disease patients.

Chronically Simple

First up is Kristy Dickinson, Patient, Founder and Managing Director at Chronically Simple, which provides a digital health tool for patients and caregivers.  As a rare disease patient herself, Dickinson needed something to better manage the plethora of specialists she was seeing across different organizations.  Plus, she needed to connect them all and track her health records since they weren’t doing that for her.  She asked how other chronic patients were dealing with this and the answer was: Binders!  Chronically Simple was built to provide a better solution for chronic patients and their caregivers.  Check out our interview with Dickinson to learn more.

Learn more about Chronically Simple: https://www.chronicallysimple.com/

Varient

Next up is Katheron Intson, Founder and CEO at Varient, an app that tracks rare disease treatment and connects genetically similar patients to know which treatments have worked and which haven’t worked.  As a PhD student in the lab, Intson discovered that one of the most helpful resources for the rare disease community was connecting families for discussions around which medications helped treat symptoms and which ones made things worse.  Families could then take this information to their doctors to evaluate treatments that could help them.  Varient is working to solve this problem for rare disease patients at scale.  Watch our interview with Inston below to learn more.

Learn more about Varient: https://www.varientapp.com/

Mejo

Finally, we talked with Ryan Sheedy, Caregiver and Founder at Mejo, a web app that helps families track their child’s most important medical & care information.  Sheedy’s story starts when his son was diagnosed with a rare genetic condition called Costello Syndrome.  Frustrated by the number of times he was asked “tell me about what’s going on with your son?” and needing to be able to explain all the complexities to new caregivers, he first started created a PowerPoint to solve the problem.  Years of work later, he’s created the web app Mejo for pediatric rare disease patients and their caregivers to easily capture their child’s health information, organize the information in a useful way, and then an easy way to safely share that information with medical professionals.  It’s one of the most comprehensive and beautiful exports of a patient’s health history I’ve seen.  Check out the video with Sheedy below to learn more.

Learn more about Mejo: https://www.mymejo.com/

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About the author

John Lynn

John Lynn is the Founder of HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

   

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