So, you’re thinking about attending your first-ever JSRDF Conference—or maybe you’ve already registered (yay!). Either way, you might be wondering:
What’s it really like? Will I know anyone? What should I expect?
We totally get it—trying something new can feel a little overwhelming. But trust us, the JSRDF Conference isn’t just another event. It’s a place where you’ll feel welcomed, understood, and part of something truly special from the moment you walk in the door.
Here’s your friendly guide to what you can expect as a first-time attendee!
1️⃣ You’ll Be Surrounded by People Who “Get It”
Ever had to explain Joubert Syndrome over and over? Not here. At this conference, no one will ask, “Wait, how do you spell that?” because we all already know!
The moment you arrive, you’ll be surrounded by families, caregivers, medical professionals, and individuals with Joubert Syndrome who truly understand.
There’s something so powerful about walking into a space where you don’t have to explain your world—because everyone just gets it.
2️⃣ There’s a Mix of Learning and Fun
Yes, there are incredibly valuable sessions led by top experts on Joubert Syndrome, therapies, and daily living strategies—but this conference is about more than just information.
Expect plenty of casual hangouts, family-friendly activities, and moments to just connect with other parents, kids, and adults who share your journey. Some of the things you’ll get to do:
✔️ Learn from medical professionals and researchers
✔️ Hear from other parents and individuals with JS
✔️ Attend Q&A panels to get your biggest questions answered
✔️ Join social events designed to help families bond
✔️ Let your kids meet and play with others just like them
3️⃣ You’ll Make Connections That Last
You might arrive feeling a little nervous, but we promise—you won’t leave that way.
This conference is where friendships are formed and support networks grow. You’ll meet other parents who understand what you’re going through, caregivers who can share advice, and adults with Joubert Syndrome who offer so much inspiration.
It’s the kind of event where you find yourself chatting in the hallway, sharing laughs over lunch, and exchanging contact info so you can keep in touch after you go home.
4️⃣ It’s Okay to Feel Emotional
For many families, attending the JSRDF Conference is an emotional experience—in the best way.
Some parents say they’ve never met another family with a child like theirs until they came here. Others talk about how special it is to see their child make friends with other kids just like them. And for individuals with Joubert Syndrome, it’s an amazing chance to connect, share experiences, and be part of a supportive community.
It’s completely normal to feel a mix of emotions—joy, relief, excitement, maybe even a few happy tears. That’s the power of community.
5️⃣ You’ll Leave Feeling Inspired and Supported
If there’s one thing we can guarantee, it’s this: You will not leave this conference the same person who arrived.
You’ll go home with new information, new friendships, and a newfound sense of belonging. You’ll feel more equipped to navigate the challenges of Joubert Syndrome and more connected to a community that’s always here for you.
And when the next conference rolls around? You’ll be counting down the days.
Ready to Experience It for Yourself?
If you’re on the fence about attending, we encourage you to take the leap. We promise—you won’t regret it.
💙 Come for the information. Stay for the friendships. Leave feeling empowered. 💙
📅 Register today and get ready for an unforgettable experience!
