RARE Patient Advocacy Summit Kicking Off

September 12, 2022

Watch out San Diego – the rare disease community is back together, and we’re not sure you can handle the excitement heading your way!

After two years of cancellations of the in-person RARE Patient Advocacy Summit experience, more than 500 rare disease advocates will gather this week to learn, grow, and celebrate being rare together. And whether a first time attendee or veteran with years under their belt, we’re all “SO EXCITED!”

While there are more than 10,000 different rare diseases, together, 1 in 10 Americans and more than 400 million worldwide have a rare disease.

The fun isn’t just for the in-person crowd. Space was limited this year for health and safety reasons, hundreds of additional participants from around the globe will log online to watch sessions live online. And we can’t forget how important connecting online is for the community – check out the discussion and scavenger hunt/games section of the platform for some extra fun surprises this year.

That doesn’t mean there’s less of a countdown for days…or sleeps…’til the fun begins.

After all, the virtual crowd can continue the much-loved tradition of online education in your pajamas, and won’t have to struggle with wardrobe decisions like speaker DadVocate, Adam Johnson.

The 2022 RARE Patient Advocacy Summit’s theme is at the heart of what we all do – Rare Life. Bonded Together – with sessions and tracks dedicated for rare adults, caregivers, advocacy leaders, and more. If you’ve been before, you know it isn’t just about the sessions. We know how important the connections patients, caregivers, advocates, scientists, industry…the community…makes here are, and are excited to catch a glimpse of what people are looking forward to this year.

We all wear multiple hats – advocate, patient, parent, sibling, care partner, healthcare provider, advocacy leader, author, volunteer.

And whether your life looks different than you thought it would…

…or you’ve been on this journey for a long time and suffered great loss…

…there’s a place for you here.

We’re inspired and motivated by the stories and experiences of the community joining us online and in person. When you’re in this rare community, you quickly realize you’ve found your place. Your people. And that everyone around you has a one-in-a-million story to share. A story of struggle, triumph, pain, support, loss, growth, laughter, tears, and strength. A story of hope. And that’s why events like these are important.

Because this rare life is better when we’re bonded together.

We hope you’ll join us for the 2022 RARE Patient Advocacy Summit.  Registration is still open for online participation here.

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