Events

You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference, taking place Thursday, July 16, through Sunday, July 19, 2026, in Lombard, Illinois, a suburb of Chicago. This family-friendly event, held at the Westin Chicago Lombard, is NPKUA’s largest PKU gathering in the country and invites anyone touched by PKU, including …

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The TBCK Foundation is excited to host “Black Ties for Rare”, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday, July 19, from 5-10 PM at the Hyatt Regency Aurora, CO for an evening of connection, storytelling, and community.   "Get ready for an unforgettable evening …

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The Hydrocephalus Association will host HA CONNECT, its 19th Annual National Conference on Hydrocephalus, in Indianapolis from July 23–25, 2026. Families, clinicians, researchers, and industry leaders will gather to connect, learn, and explore the latest advancements in hydrocephalus treatment, management, and everyday living. hydrocephalusconference.org

Adult Cystinosis Webinar: Beyond the Kidneys Date: Thursday, August 6 Time: 4:00 PM CT Location: Zoom ☆ Topics of Discussion ☆ • Transitioning from pediatric to adult care • Gaps in adult cystinosis care • Psychosocial experiences and quality of life • Opportunities to improve long-term support and care