Texas Complex Care & Rare Diseases Coalition Founding and Launch Event

From parallel efforts to shared impact: Building a statewide network for complex care and rare disease in Texas.

We are pleased to invite you to participate in the inaugural meeting of the Texas Complex Care & Rare Diseases Coalition (TCCRDC), to be held during the Texas Pediatric Society Annual Meeting at the Kalahari Resort & Convention Center in Round Rock, Texas.

Children and young adults with medical complexity and rare diseases often require care across multiple providers, specialties, systems, and settings. Yet many of us are working in parallel—often within our own institutions—trying to solve the same challenges: fragmented care, heavy coordination burdens on families, limited opportunities to share data and best practices, and a lack of scalable models that consistently improve outcomes for this population.

The goal of this effort is simple: to begin connecting that work across Texas in a practical, clinically grounded way.

We envision a statewide learning and research collaborative that brings together clinicians, researchers, patients, caregivers, and community partners to improve care delivery, advance meaningful research, and ultimately transform outcomes for individuals with medical complexity and rare diseases. By learning from one another and identifying shared priorities, we can build the foundation for future initiatives that standardize care, evaluate innovative models of service delivery, develop shared data resources, and generate evidence to inform policy and payment reform.

• Align on shared priorities and opportunities across Texas
• Learn about existing complex care and rare disease programs throughout the state
• Identify opportunities for collaboration in clinical care, quality improvement, education, and research
• Discuss opportunities to partner with patients, caregivers, and community organizations
• Begin shaping a more formal statewide initiative focused on improving outcomes and reducing the burden of care for patients and families

This effort is intentionally early-stage and clinician-driven. There is no expectation beyond participation and perspective, but your experience and insight will be critical in determining what this collaborative becomes and how it can best serve patients, families, providers, health systems, and communities throughout Texas.

We welcome participation from physicians, advanced practice providers, nurses, care coordinators, therapists, researchers, trainees, patient and family advocates, community organizations, and others committed to improving care for individuals with medical complexity and rare diseases.

Breakfast and lunch will be provided.

Info: "How does care for children with medical complexity actually function today?"
Together we will step back from our individual institutions to examine the system as families
experience it, identifying the patterns, relationships, and structural gaps that shape care across
Texas.

Info: "What should an exceptional healthcare system make possible for children and families?"
Families experience healthcare as a continuous journey rather than a series of encounters.
Through dialogue with families, we will explore the capabilities that matter most and how they
should shape the system we aspire to build.

Info: "If we could begin again, what would we build?"
Setting aside today's organizational and reimbursement constraints, participants will work
together to envision the essential functions of an ideal statewide system of care for children with
medical complexity and rare diseases.

Info: "Which capabilities require statewide collaboration?"
Together we will identify the shared infrastructure needed to support continuous learning,
coordinated clinical care, longitudinal data, research, quality improvement, advocacy, and
innovation.

Info: "What kind of collaborative can transform vision into lasting progress?"
Rather than focusing on governance alone, this session explores the organizational structures,
partnerships, leadership, and culture needed to sustain a statewide learning health system and
accelerate meaningful change.

Info: "Where should we begin?"
Every enduring institution begins with one meaningful step. Participants will identify one or two
collaborative projects that can be launched immediately, building trust, demonstrating value, and
creating momentum for the work ahead.

Info: Reflecting on the day, identifying immediate next steps, and inviting participants to become
founding partners in a statewide learning community dedicated to improving the lives of children
with medical complexity and rare diseases.