Living with or caring for someone with Joubert Syndrome can be a journey filled with questions, emotions, and moments where you just wish someone else understood what you’re going through. That’s why the JSRDF Family & Medical Conference isn’t just an event—it’s a lifeline, a reunion, and a homecoming for so many.
If you’ve never attended before, let us show you why this conference means so much to the families who come back year after year.
You’re Not Alone Anymore
The feeling many first-time attendees share is this: “For the first time, I didn’t feel alone.”
When you walk into the JSRDF Conference, you’re instantly surrounded by people who understand your world. Parents navigating new diagnoses. Adults with Joubert Syndrome sharing their experiences. Siblings who have grown up advocating for their brother or sister. Every person has a story, and every story matters.
Here, no one asks, “What’s Joubert Syndrome?” Everyone knows—and they care.
Building a Village That Lasts Beyond the Weekend
One of the most powerful things about the conference is how it helps families build real relationships. It’s not just about listening to experts or collecting brochures. It’s about:
Swapping stories with someone who’s walked in your shoes
Watching your child light up as they play with kids just like them
Meeting parents who just “get it”—no long explanations required
These aren’t just friendly faces you see for a few days. They often become the people you text late at night with questions, celebrate milestones with, and lean on during tough times.
Learning from Experts—and Each Other
The JSRDF Conference is also a place to learn and grow. Families gain direct access to leading researchers, doctors, and therapists who specialize in Joubert Syndrome and related disorders. Past sessions have included:
Latest updates on clinical trials and genetics
Tips for navigating IEPs and educational advocacy
Strategies for physical, occupational, and speech therapy
Transition planning and resources for adulthood
But some of the most memorable learning happens in the hallway chats, family panels, and Q&A sessions—where experience meets empathy.
A Safe, Welcoming Space for the Whole Family
The entire event is designed to be accessible, inclusive, and truly family-friendly. Whether you’re bringing a toddler, teenager, or affected adult there’s a place for every member of your family.
We offer onsite childcare with trained staff who are experienced in supporting individuals with a wide range of needs, ensuring that children and young adults with Joubert Syndrome can feel safe and engaged while caregivers attend sessions.
Plus, we host a special siblings camp—a fun and supportive program just for brothers and sisters! It gives them a chance to connect with peers who understand their unique role in the family, all while having a blast with games, crafts, and new friendships.
From enriching sessions to fun social events, every part of the conference is thoughtfully designed to support the whole family.
A Conference Like No Other
This isn’t a big, impersonal event where you’re just another face in the crowd. This is a place where:
People remember your name
Hugs are common
Lifelong friendships begin
And most importantly—you feel seen, heard, and valued
As one past attendee shared:
“We came to learn about Joubert Syndrome, but we left with something even better—a community that feels like family.”
Ready to Join Us?
Whether this is your first time or your fifth, we invite you to experience the magic of the JSRDF Conference. Come as you are. Leave forever changed.
👉 Register now for the upcoming conference in Indianapolis this July.
Let’s learn, laugh, and lift each other up—together.
