| Dear Batten community,
We are thrilled to invite you to the First Carolinas Batten Disease Family Day! Join us for a day of connection, learning, and support tailored for families, patients, siblings, and professionals dedicated to Batten disease care.
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- Cost: Free for all attendees
- Meals: Lunch and refreshments provided
- What to Expect:
- Family Get-Together: A welcoming space to connect with other families affected by Batten disease, share experiences, and build a supportive community.
- Children’s Play Room: A fun, supervised environment for patients and siblings, filled with engaging activities to ensure everyone enjoys the day.
- Presentations for Parents and Caretakers: Informative sessions covering:
- Access to care and available services
- Latest research in Batten disease
- New developments in clinical trials
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- Networking Opportunities: Connect with medical professionals, researchers, and support staff dedicated to improving the lives of those with Batten disease.
- RSVP Information:
- PLEASE RSVP BY THIS SUNDAY, SEPTEMBER 14!
- Families: Please RSVP to ensure we can plan for all attendees.
- Professionals: We welcome medical staff, caretakers, and researchers to join us.
- Call for Volunteers: We are seeking enthusiastic staff, medical professionals, and caretakers to assist in the patient/children’s activities or the siblings’ room. If you’re interested in volunteering, please indicate your preference when RSVPing or contact us at for more details.
Let’s come together to celebrate resilience, share knowledge, and foster hope. We look forward to seeing you at this special event!
Warm regards,
The Carolinas Batten Disease Family Day Organizing Team
UNC Batten Disease Center of Excellence Affiliate
Duke Pediatric Neurology
Special Thanks!
BDSRA – Centers of Excellence Fund
BioMarin support funds |
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