5 Things to Do If You Can’t Make It to Global Genes 2015 RARE Patient Advocacy Summit

August 5, 2015

I’m a part of the team here at Global Genes and because of my own rare disease diagnosis—I’m also a part of the rare disease community in general. Each year all are invited to our annual RARE Patient Advocacy Summit and it comes as no surprise that the reality of our rare diseases can impact our day-to-day lives. From seeing friends, eating out, vacations and major events like this one, not all are a physical possibility. My situation means that this year I won’t be able to travel to Huntington Beach to be there in person.

Not going to lie—I’m pretty bummed out. The good news is that, in a way, I’ll still be there. Global Genes is broadcasting the entire summit live online and I’m gathering my comfiest bathrobe and popcorn (just kidding, I have gastroparesis I haven’t been able to eat popcorn since the 90’s) and tuning in to watch it all go down.

If you haven’t registered for the September 2015 events and can’t make the great pilgrimage to the hub of rare and genetic education—you should sign up to watch the broadcast with me!

Here are some ideas on how you can make your Summit watching party the best party of the year.

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Get hyped with the agenda of speakers. Those bright lights are shining on the stars of the rare and genetic disease community. Get pumped for Matt Wilsey—an active Parent Advocate, Rare Disease Hunter, and President of the Grace Wilsey Foundation. He’s answering the questions you need answered most, like: What are the steps you should take next to educate yourself or your loved ones on this new life’s journey after a rare diagnosis?

Among others, David Glazer of Google Genomics will be taking to the stage with information on how new technology is revolutionizing the way we store, process, explore and share genomic data. Be the first to hear why this holds untold promise for identifying patients, spurring research, and finding new answers for rare disease patients and their communities.


giphy-80Let everyone know you’ll be totally MIA. Nothing brings the party down like an unexpectedly long call from Aunt Sara where you’re forced to turn the Livestream on mute. Doesn’t she know you’re in the middle of a learning experience? Put out those unavailable statuses on Skype and make sure to leave a link to the broadcast so they can watch too!



Watch it in person with family, friends, or other patients! Get a viewing party to watch the summit take place. Throw it at your house! Your school! Even invite your co-workers to watch in the conference room. Everybody is invited!


Tweet like everyone’s watching with our hashtag: #2015GGsummit. Follow the action, the suspense, the intrigue—all on social media!


Reach Out! When the broadcast is over, it’s time to get networking! Add your favorite speakers and rare community leaders on Linkedin, Twitter, Facebook, G+ and contact them with questions through email.


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