Events

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This page is where you will find upcoming events hosted or supported by the Foundation, along with opportunities to connect, learn, and participate in our community.

Our events are designed to bring together families, clinicians, scientists, and advocates in ways that are welcoming, practical, and meaningful.

Please check back often. New events are added throughout the year.

Upcoming Events

Below you will find our event calendar. Events may include virtual sessions, in‑person gatherings, conferences, and community meetings.

Each listing will include:

Event title and date
Audience (families, clinicians, scientists, or open to all)
Format (virtual or in‑person)
Brief description of the focus
Registration link or participation details

Calendar coming soon.

Types of Events You May See

Family-Focused Events

Educational webinars and workshops
Community support sessions
Panels with clinicians or researchers
Parent‑to‑parent connection events
Medical and Family Conferences
Scientific Seminar Series
Research participation deadlines

These events are designed to be accessible, respectful of families’ time, and grounded in lived experience.

Clinical and Scientific Events

Research updates and roundtable discussions
Clinical education sessions
Conference symposia and workshops
Collaborative meetings with researchers and clinicians

These events focus on knowledge sharing, discussion, and collaboration across disciplines.

Conferences

We host and participate in conferences that bring families, clinicians, and researchers together.

Upcoming conferences, including major multi‑day meetings, will be highlighted here with advance notice, agendas, and registration information.

How to Stay Informed?

To stay up to date on events:

Subscribe to our email updates
Check this page regularly
Follow Foundation announcements through our community channels

Some events may have limited capacity, so early registration is encouraged when available.

Interested in Getting Involved?

If you are interested in:

Attending an upcoming event
Helping organize or support an event
Speaking, presenting, or collaborating

We welcome you to contact us.

A Note About Our Events

Our events reflect the values of the Foundation:

Respect for families and lived experience
Commitment to scientific rigor
Openness to collaboration
Focus on improving quality of life

We aim to create spaces where people feel informed, supported, and connected.

Thank you for being part of our community. We look forward to seeing you at an upcoming event.