PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit

Posted October 4th, 2013 by

I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit.

Ben was on a panel discussion about connecting communities online, which was a hot topic of the day, along with patient registries, and putting patients and their families first. @bheywood joined Kyle Brown of @patientregistry, @ThePatientsSide of @caresync, and @bar2bar2 to share about how open and patient-centric registries with information that all stakeholders care about—physicians, patients, researchers, caregivers—are better for research. Partnering expands resources to support a robust and large registries, and listening to what patients and families are saying creates a better set of information. Here’s a cool doodle from @dianedurand with a summary of the panel:

RARE

Collaboration is not only key when it comes to open registries, we learned on another panel with @billstrong of @gsfoundation, John of @Child_Neurology, @keeganj of @fpwr, and Sue of @TaySachs. Collaboration is also important for nonprofits and people thinking about starting a nonprofit. It’s not a zero sum game: when nonprofits collaborate, they can achieve more, together. Having a defined mission and clear intentions helps to define roles of each advocate and nonprofit. Here’s another doodle recap of that session.

The highlight of my day was definitely spending time with PatientsLikeMe member slowmo_tam. She has a wonderful presence in our MS community, and getting to know her in real life was a lot of fun. She said to me after the event “I feel like I’ve known you forever”—which certainly is the case. Online relationships are great, but there’s something special about putting a face to a name/screenname.

Lots of great energy and ideas from the patient advocacy summit. Thank you Global Genes | RARE Project for bringing us all together!

PatientsLikeMe member LizMorgan


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