Rare Disease Town Hall Meeting

A Virtual Community Conversation

Supporters of Families with Sickle Cell Disease, Inc., in collaboration with Oklahoma Rare, invites you to join us for an important statewide virtual town hall focused on rare diseases.

This community-centered discussion is designed to bring together individuals, families, caregivers, advocates, and professionals to share information, resources, and collective action strategies that support those affected by rare diseases across Oklahoma.

Together, we are building stronger connections, increasing awareness, and strengthening advocacy efforts throughout our state.

Event Details

Date: Thursday, March 5, 2026
Time: 6:30 PM
Format: Virtual Meeting (Zoom)

Meeting ID: 838 5024 4668
Passcode: 022605

Register in advance:
https://us02web.zoom.us/meeting/register/5jviz3t1RKaOctL8ffRiBQ#/registration

About the Town Hall

“Hands Across Oklahoma” is more than a meeting — it’s a movement toward collaboration and community empowerment.

Participants will:

• Engage in an informative and interactive discussion

• Learn about resources available to rare disease families

• Connect with advocacy leaders and organizations

• Share experiences and identify common challenges

• Explore solutions to improve access, care coordination, and support services

This town hall aims to strengthen partnerships across Oklahoma to better serve individuals and families living with rare diseases.

Featured Speakers

Sky Collins

Founder, Oklahoma Rare

Sky Collins is a passionate advocate dedicated to supporting and uniting Oklahoma’s rare disease community. Through Oklahoma Rare, she works to amplify patient voices and foster collaboration among stakeholders.

Velvet Brown-Watts

Executive Director
Supporters of Families with Sickle Cell Disease, Inc.

Velvet Brown-Watts is a leader in advocacy and community-based care, committed to improving systems of support for families impacted by sickle cell disease and other rare conditions.

Who Should Attend?

• Individuals living with rare diseases

• Parents and caregivers

• Healthcare professionals

• Social workers and case managers

• Nonprofit leaders

• Policy advocates

• Community stakeholders

If you care about strengthening support systems for rare disease families in Oklahoma, this conversation is for you.

Why This Matters

Rare diseases impact thousands of Oklahoma families, often creating unique medical, emotional, and financial challenges. Community dialogue and coordinated advocacy are essential to improving outcomes.

By coming together, we can:

• Increase awareness

• Expand access to care

• Improve policy advocacy

• Strengthen community support networks

Join us as we stand together — hands across Oklahoma — to ensure no family facing a rare disease stands alone.