The launch of a new pediatric NF program at Kennedy Krieger Institute is a strategic expansion of the well-established Johns Hopkins Comprehensive Neurofibromatosis Center. Founded over 20 years ago, the center is a global leader that has helped set care standards and improve outcomes for people with NF.

What if you could walk into your next check-up with a personalized NF1 checklist, and your doctor had one too? At the NF Network's "Breaking Down Barriers to NF1 Care" webinar, Dr. Vanessa Merker of Mass General revealed, for the first time anywhere, whether My NF Guide makes that difference. The early results for adults are encouraging.

On Wednesday, July 29, the NF Network was honored to host the opening night of Rare Square: A Rare Community Art Exhibition at Positive Exposure Gallery in New York City. While the exhibition brought together artists and stories from across the rare disease community, for the NF Network, the evening was a powerful celebration of the creativity, resilience, and individuality of people living with neurofibromatosis.

Our Memphis event chair, Carrie Wylie, and her daughter, Kaitlyn, recently sat down with Dr. Pivnick to discuss the clinic's growth and future. For Kaitlyn—who has lived with NF1 since infancy and has learning disabilities as a result of her condition—the opportunity to interview the physician who has cared for so many families was especially meaningful.